u/ChuckaChuckaLooLoo3

Have an open-concept lofted space. Ceiling is about 24 feet at the highest on a 12/12 pitch. Crack appeared half-way down about a year after my drywall guy was done. I have filled and sanded this thing three times. Every October it comes back.

Should I just live with this and say it adds "character" or ? I was thinking of filling it with some kind of expanding/contracting material so that it just moves with the seasons.

Any suggestions?

I was getting chemo treatment and one of the drugs was causing neuropathy in my feet and hands. So my Dr. prescribed 300mg a day of gaba. I did not like how it made me feel so I requested they get me a 100mg prescription I could take 3x a day instead so that the initial "rush" would not affect me so strongly because it was making me almost a zombie for a few hours.

After about two months of taking the 100mg. I noticed that it was not doing ANYTHING about the neuropathy. In fact, I was getting edema along with that (one of the side effects of gaba, btw.)

Naturally, I went to my Dr. (oncologist) and said that it would be great if they could warn me about side effects from any drug they prescribe from that point on, so I could make an informed decision. I was not angry, just matter of fact about it and said I'd like to get off of it immediately.

As you might expect, he gaslit me all over the damn place. "In my 15 years of practice, I've never had any patient tell me about side effects, nobody I've ever prescribed this to has had any withdrawal symptoms." I had already seen at least 30 videos on YouTube from qualified pharmacists and Drs. talking about how this is not a good drug and that it's way over-prescribed for off-label uses. Also had read a lot of patient forums describing things, so I knew he was full of crap. My trust of this Dr. fell down to zero.

So that night I made my own 1-month weaning schedule. 75% for one week, then 50% for the next week. 25% the following 1.5 weeks (where I'm currently at) and then down to 15% twice a day, then only once a day for the remainder.

It has NOT been easy at all. The 2nd week I woke up many nights sweating or would get sweaty during the day for no reason, just sitting at my computer. Like suddenly drenched in sweat. Then the migraines started nightly. First one side of my head, then the other.

From what I've read, some people are extremely sensitive to this drug. We are not all built the same. I am apparently one of the sensitive patients. I wish the Drs. that prescribe this had to try it for a couple of months and then quit. They'd see exactly what many patients are going through.

For those of you who are on this drug without any problems, good for you.

For the rest of us, it's really awful.

I freelanced for a non-profit. I did all the graphic design work for them along with many other marketing projects. I had this client for over 12 years and the CEO and I had a very solid relationship no matter what staff changes happened. For the most part, the other people working there were very nice.

Enter this new in-house accountant we'll call Connie. Because the CEO was so mellow and nice, he pretty much let people run their departments like they wanted and usually didn't interfere.

Connie liked to pay all invoices on the 15th of the month. Let's just say she was pretty rigid about it (something something steel rod). So if I incurred any outside costs, that meant I had to cover them for at least 30 days if they happened right after the 15th. As a one-man biz, it wasn't working for me as some of the costs were over 4k. I could cover costs under 2k but if there was a big printing job or something of similar size, it could be much higher. I tried twice to explain to her over the phone that my invoices were not like utilities or supplies by other companies, I was personally carrying a lot of these big costs and needed the money a bit faster than she was allowing.

Her reply? She said that if I wanted to get paid faster, that I needed to invoice earlier. But that didn't make sense because I didn't even know the total costs yet. She also said I could ask the CEO to pay the invoices on his company credit card if it was an emergency. Well, me carrying more than 4k for 30 days was an emergency in my book.

Cue my malicious compliance.

I just started handing all my invoices to the CEO, who naturally just paid them right away with his credit card (I accepted credit cards at the time). Well, this left poor little Connie out of the loop and she wasn't too happy about it. She went to the CEO and complained that she was having to track the CC charges and it was getting too complicated for her bookkeeping. (I have no idea why that would be complicated, but that was Connie.)

He called me to ask what the deal was and I explained what costs I was having to carry if she didn't pay quickly but instead waited until the 15th of the month. That made him pretty mad and this is a guy who never got mad. So he told Connie "from this point on you need to pay the damn invoices as soon as you get them."

After that, every time I went in to discuss something with the CEO, (which was often) instead of mailing the invoices, I made a point of bringing them personally to Connie and standing there while she stiffly wrote out a check. Good times.

In one part of the movie, Daniel is on the run with his girlfriend and when he gets caught, he leaves behind the backpack with ALL of the digital information thingies as the girlfriend runs off with the alien device.

Yet, somehow when they get to the newsroom, he has them all again to upload to the world?

How did that happen and why didn't the big scary corp just keep them when they had a chance to?

I hate script holes like this.

(Male, 67, Dar-V, U.S.)

Of course, people have phones and can do this all digitally, but hear me out...

To help me figure out my situation, I create and print out a chemo calendar every month that I put on my fridge. It shows the days of the month like a regular calendar, but it shows what treatment I'm getting on what day/time and all the other days list my pill regimen at home, divided by day and night (I have some that are twice a day.)

For me it's a great way to get through this thing. I take my last pills before bed and then put a big black X through the day and (hopefully) go to sleep. That day is gone, time for a new one. For some odd reason, I also think it makes the days go faster.

Just wondering if anyone else does this or similar - or - if you think it might be something that could help you on this journey.

(Male, 67, mm patient, light chain lamba on Dar-V)

Today I went for treatment and afterwards was going to pick up a new prescription for Gabapentin. I have been on 300mg pills to help with neuropathy and it calms my stomach down a lot and helps me sleep. However, the 300 is too strong (leaves me like a zombie) and I asked my nurse practitioner (who prescribed it in the first place) if they could switch me to 100 3x a day instead so that I still get the medication but not all at once and can spread it out over 24 hours. I'm very small stature and only weigh 135. She really resisted doing this for some reason, stating that it would be "working backwards". (?)

Well, I have this thing called logic and if I'm putting 300mg into my body at one time I cannot conceive of any medical reason that taking 100mg 3x a day would not basically be the same, but instead of the big hit up front, a steady more manageable amount throughout the day so that I can function and not be a zombie.

She finally relented but was obviously not happy about doing so. Why? I have no idea. Sometimes when you cross a doctor (and I have had a lot of doctors in my life) they don't like their decisions being questioned.

But here's where the BS comes into play.

When they call in a prescription for a patient that is already on the same med but a different mg, the MD has to put instructions on that prescription to say "this 100mg is a replacement, cancel all refills for the 300mg" and then the pharmacy can legally fill the prescription. If they don't give that instruction, it cannot legally be given to the patient. This was told to me by the pharmacist. And they had called my NP twice to get confirmation with zero response. So I called the center and told them that we were waiting in front of the CVS for the prescription and if NP could simply call them and verify this info, we could pick it up and be on our way. I asked if the Dr. was busy and they said "no", that she was not and had no patients in at that moment.

Well, apparently that is too much to ask. We waited for an hour, zero call.

Normally, I would not even worry about this. I'd wait for another day and just pick it up later. But seriously, it's a phone call. 2 minutes, that's it.

So now I'm left with this feeling that basically, my oncologist doesn't really care about my well-being and I'm just a number. I'm a MM patient on chemo, I have back fractures and driving is difficult, I live an hour and a half from the pharmacy and the center.

I'm going to see if I can get a different NP and get her off my team because I feel like this is a very sloppy approach. (I don't have many choices, the next nearest center is 2.5 hours away). The patient's well-being should come first, the patient is the important person here, not the NP. It's really odd that she sent it over without the proper wording and I see that as a potential problem going forward because MM patients can't afford mistakes. And they knew I was waiting there, far from home and did absolutely nothing to expedite things (I think this is the thing that really is unacceptable.)

I got home 2 hours later. At 4:05, 3 hours later, they called and are finally going to call this information into the pharmacy and my 100mg pills would be ready in 3 more hours which would have made it 7pm. I guess some people would wait that long but I won't. Meanwhile, I guess I'm going to keep dividing up the 300mg pills into 3rds and just keep adding them to my shakes 3x a day. It's a little difficult because it's powder in a capsule, but I got it handled and it's a work-around.

You have to do whatever it takes in these situations and advocate for your health. I get that med staff can get side-tracked, etc. but when it's brought to their immediate attention and they still take no action, that is just stupidity and isn't in the best interest of the patient.

Edit to add: I'm a 67 yr old male in the United States with lambda chain MM on the Dar-V treatment plan.

So far, I'm past $800k since starting in April. More than half of that is "under review" by Humana. My running bill never goes down because they add a $65k Darzalex™ shot every week. And then there's the cancer center's administration bills, which I pay $200 every two weeks, but the total keeps getting higher no matter what. Those costs are not covered.

So, by the end of the year, I'll easily be past one million. According to my bank records, I do not have that much, not even in IRA, Money Market, savings/checking or stocks.

How is everyone doing out there with costs not covered? Do you know what your totals are? Are they insane? Will you ever be able to pay the medical bills? I know I won't.

ETA: Had a very long conversation with a rep at my insurance, it seems that some of these bills were not serviced correctly and they are re-submitting everything after June 1st. That's a big weight off! So basically I have paid around 9k so far, met all hosp and pharma deductibles which means I don't pay for anything until Jan 1. And the rep assured me that these errant bills will be resubmitted the same way as the ones they covered in full.

Found out in April that I have cancer. Been on chemo since April 29th. Chemo ends up making me so nauseous that I want to die. I can't sleep, can't eat, feel like crap all the time.

Enter gummies on May 2nd.

Now I micro-dose THC gummy 5mg every 3 hours. It totally gets rid of nausea. I am not really even party-level high, just slightly buzzed. I've been slightly buzzed for months now. All day, all night. I live in a world divided by 3 hour segments. And believe me, my body knows when that three hours is up because if I go to 4 hours, the nausea comes right back into play.

One day I decided to skip the gummy, just to see if I would be OK on my own. Huge mistake! The nausea was so strong my jaw was shaking. And on top of that, I got so hungry that I couldn't eat. Halfway through the day, I finally gave in and did another 5mg dose. Within 5 minutes the nausea was totally gone again.

Being a little high all day and all night can be rather odd. At first, I didn't remember any of my dreams. But I think as my brain got used to THC being in my bloodstream all the time, it settled down and now I have normal dreams and remember them. I also have a great appetite which most chemo patients do not. I also sleep really well, which most chemo patients do not.

My oncologist wasn't happy about my THC usage. He wanted to immediately prescribe Marinol, a synthetic THC drug. I said "No way". What I have works well, I don't need to try something else. I finally convinced him to chill on this subject and he ended up saying if it works, keep it up.

All in all, my THC gummies are a miracle. With Texas adopting the "no THC" law, I got sort of scared and stocked up. I now have a 2-year supply, just in case that kind of backward thinking spreads to other states.

The cancer center I go to has a system of setting up your appointments and giving you a calendar of chemo days, consults, etc. What I'm having a hard time with is that this is done without any discussion with the patient.

While realizing that timing is important in the chemo cycles, it still seems like such a different approach to what I'm used to where you can work out the appointments with the administrative person at the Dr.s office. Is this cancer center's system normal / is this the same pretty much everywhere for MM treatment?

ETA: Thanks for all the responses. I talked to the person who gets the scheduling today from the main unit. We were able to work out the next month fairly well and I think she got the point. And I learned that the person who actually sets it up is the staff pharmacist. She is the one that has to ship the drugs in the day of, so it has to be regulated and I get that. Just wanted to get the time of day out a bit later because we live so far away from the treatment center. So it is all figured out at this point and both sides are OK.

Been very hard for me to figure out diet, even with the help of a (almost useless) dietician. I have had a weight loss of about 7 pounds so far and I don't want to keep going on the chemo diet, thanks. I am trying to gain so I can be ready for SCT sometime next year.

I need some ideas for food and since pretty much everyone here is familiar with this issue, hoping I get some input.

Lately for me it's just been starches (crackers, tortillas, toast) and if I'm not too nauseated, eggs in the morning. Oddly enough, turkey hotdogs seem to sit well. Protein shakes are OK, but sometimes I can't even look at one.

Do you have a "go-to" food that works really well for you?

Currently, am in the 3rd week of chemo.

Seem to be trapped on some days in this cycle of hunger/nausea/hunger/nausea. It is horrible. I have blood sugar issues anyway (I'm hypoglycemic) and I have to keep a minimum of SOMETHING in my system or I get other symptoms that are just as bad. I wake up, I'm starving, I eat something and immediately I'm nauseous and when that passes, I'm starving again but can't hardly eat because of the nausea.

Has anyone else gone through this and what did you do to treat it?

ETA: Finally yesterday was able to get a script for anti-nausea med, Zofran. Wow, such a difference! Apparently, according to what I've been reading, Velcade/bortezomib can cause a "false" hungry signal to the brain, even if you just ate! So, unfortunately, that's still there but I'm trying to ignore it and just eat a saltine in tiny bites when it happens. However, that is much, much easier to do than put up with that constant nausea/hungry/nausea cycle. That seems to be something I have a terrible time handling, worse than a wound, the stomach injections or even my spinal compressions! It's incredibly mentally debilitating for me.

Let's face it, we're all having some kind of side effects from what we're putting in our bodies. Most of them are the normal stuff we've all gone through, but some of us get really odd ones!

I'll go first: Hot Hands! The palms of my hands get super hot! I am using ice packs wrapped in towels to feel normal.

It's never happened before. I am on the standard protocol (D-VRd) but I think I've narrowed it down to the Velcade being the culprit but who really knows for sure?

Talking to my oncologist once I was done with my first round of chemo. I was asking if there was some sort of picture we could get of whether or not there was any change or shrinking of lesions, etc. and if another scan would be done perhaps after the next round.

She said "No, we don't do any scans or MRIs until the very end of the 5th round of chemo. We do blood draws only to check the progress. That's it."

Is that normal? It seems like I remember reading somewhere that in the more high-end places (Sloan-Kettering, Mayo, etc) that they get an MRI halfway through chemo treatments. I'm wondering if those patients paid out of pocket for them.

What has your experience been with this? Did you get any mid-chemo MRIs or PETscans to check progress?

In the last week of a 5-week course of chemo here. Along with various other symptoms, I've noticed that my skin seems to hurt, especially my torso areas. It feels like it's burning up and when it gets into contact with anything, it hurts like I'm being rubbed raw, but I'm not.

Is this a normal side effect?