STEAM ROOM FOR ANGER

marijen

The thing is it’s not over after two months. We don’t even know what hit us at that point, but we’re not dead like runor’s cows. I just had a recent very bad experience with a new doc. I’ve really had it with wasting my time trying to get help. I did see the video, it doesn’t get more obnoxious.

Meow13

marijen, sorry to hear. I did have one time when I had to have an mri biopsy on an area the routine mri found. My oncologist called me saying it is something and I don't think it is fat necrosis after 5 years. I got that absolute sick panic NO I can't go through this again. I took a pill settled down but ugh.

As soon as they got the biopsy results confirming fat necrosis I went back to normal. That anxiety is crippling. I really feel for that kid, it was so bad he passed out playing basketball.

I would want to know if I need pain relief or anti anxiety meds I wouldn't be given a hard time.

marijen

They are all scared silly by the govt. And they have no idea what’s going on with us unless it happens to them. What is the painkiller that agrees with you? Have you heard of Pain Contracts where you get to have surprise pee tests? Because of abusers they don’t trust even old ladies. Like TSA. I agree the anxiety is too much. It takes days out of your life. Just like cramps used to do.

Oh and check out the Walmart monitors TSA comes up on the screen. I saw that and looked up. Cameras everywhere.

jaycee49

"I've really had it with wasting my time trying to get help." Oh, Marijen. That's exactly where I am. It seems that NO help is available from anywhere. I've been to three doctors last week and will see three more this week and I will get nothing. Today, I will try to get help with continuous UTIs from my gyn. Even though my urethra is an inch from my vagina, she will have no input that will be useful. I already know that before I leave to go through the process of having a pelvic exam. Clothes off, climbing on a too high exam table, sitting in horrible chairs, waiting and waiting, having to respond to a perky medical assistant asking how I am (how do you THINK I am?). Then the doctor will brush off my problems and I will let her because I will be so anxious to leave that place. But what choice do we have but to keep trying? Just be in pain forever, I guess. I am already in pain from taking antibiotics continuously for almost a month. My wonderful urology NP is leaving, their portal doesn't work, their phone system doesn't work. What am I going to do when this comes back yet again? I like to have a plan. I've had lots of plans. None of them have worked. I give up. But you are not allowed to give up.

I'm sorry if you are reading about my issues over and over. I have posted them on multiple threads because this forum is my only outlet.

marijen

Morning Jaycee, I’m here after two hours sleep that I couldn’t get help with. No don’t be sorry about posting your troubles here. A UTI ongoing is very serious. It can lead to sepsis and land you in the hospital. Last week I smiled through a horrible inquisition! I can’t believe myself except I was so tired from not sleeping and also just wanted to get out of there. I am thinking of going to a different medical group. When you have your three appointments could you ask them who you can go to get help? Or tell the gyn you want a referral to a urologist?

jaycee49

Oh, Marijen, I have a urologist, the one where the portal is broken, the phones don't work and my NP is leaving. She just couldn't take it anymore. But she is the one who prescribes Cipro over and over even though I tell them how much it bothers me. That conversation is always with a nurse on the phone who could care less. She just wants to get off the phone. Me, too. Well, I shouldn't really complain about the practice too much. They let me show up with a sample without an appointment and send it to the lab. At least they used to. I always call first just to be nice and last time they said they would call me back. The dreaded call back. Maybe they will. Maybe they won't. How long do you wait before trying something else? It's just that the whole process takes so long. Symptoms for a few days that I try to ignore. Trying to decide which doctor's office will be the least annoying. Usually, uro wins that one but his waiting room wait is very long. Getting to doctor's office. Waiting for results. Waiting for call from doctor's office with Rx or whatever. And the whole time I'm waiting and waiting, I'm in pain. And things I take for pain cause other pain. Can you tell I'm extremely frustrated? Very. Oh, and then there is cancer. Pet scan results tomorrow from an MO filling in for my regular MO.

I am entertained, though, by the new computerized voice system they use for appointment reminders. Have you ever heard a computerized voice say "Ramadevi Medavarapu"?

marijen

I just typed a long reply and my Ipad erased it one letter at a time. So I’ll just say that today do not respond to perky, you’re not required to do that. Put on a sad-in-pain face like how you feel. But I’m not sure...what else can be done for UTI’s? Fingers crossed for you. Let us know

mustlovepoodles

I have had to go to the ER twice with severe back pain due to slipped discs. The first time they gave me enough Percocet to last a week. The second time, 7 years later, they gave me exactly 4 pills to get through from Fri to Mon. The difference? I had been diagnosed with bipolar disorder. I also have a lot of med allergies. This apparently makes me a drug seeker. I've been to the ER a few other times since then and i can always tell when they get to the bipolar part.

ARTEXASQT

Hi Jaycee,

I haven't read all the way back through your posts regarding your continuous/frequent UTI's. But I had the first one in my life back in December and then again in May. I never dreamed it would be so uncomfortable. Both times, I got the quick test in the doctor's office but they also cultured it out to see what antibiotics would work. Started me on Cipro, but changed when they got the results back. First one was klebsiella bacteria, second one was e. coli...which meant that the antibiotic that worked on one didn't work on the other. Just curious as to whether your doctor is doing this. It's crazy not to and just continue on with the same antibiotic that's obviously not working. Plus that wreaks havoc with your natural gut bacteria. Also...have you tried a good probiotic? I don't mean to be all "up in your business", just trying to think of something to help.

Misty

marijen

Misty, good to know for all of us! Thanks.

jaycee49

ARTEXASQT, I never take antibiotics without a culture. I buy sterile containers online and use those to take samples wherever. I also buy the test strips online and test a sample first. I'm an old hand at this. Been doing it for YEARS. The cancer drugs just add to the fun. They keep my white count low and my lady bits dried out. I take at least three probiotics every day. They actually work, which is more than I can say for some drugs/supplements I take. My gyn spent at least 30-40 minutes with me. She is very good. She just replaced a gyn I've had for years who retired recently. I'm really glad I got another good one. She did two vaginal cultures and is testing for everything. She really renewed my faith in doctors for the moment. Not all of them ... just her.

jaycee49

Marijen, I really tried to keep my face at least serious (thinking of your advice) but I love to joke around with the nurses and get in a dig at the same time. They are another office with a skinny counter at check in and that is one of my pet peeves. I have a photo on my phone of the one office in town with a wide counter and show it to them. It is wide enough to get out your insurance cards without dropping anything, even if you use a cane and drag around oxygen tanks. (No, I don't do either of those things but have seen people struggle with both at a narrow counter.)

I have to go look at your PM now to remember what else I meant to tell you. Gyn appointment was a success. I really like this doctor even though the practice is very child bearing centric. Everyone in the waiting room was pregnant.

marijen

Great news Jaycee! So glad it went well today. The photo thing is something I would do too! Great minds think alike?

jaycee49

Mustlovepoodles, several of my MS compatriots have a much harder time getting pain meds now than they used to. Always being accused of being drug seekers. Real pain needs real drugs. I hate this "all in your head" crap, too.

runor

This pain med hysteria has gone way overboard! I am still pissed off that after my lumpectomy, and hemorrhage and then all the internal sutures ripping out as my boob blew up like a beach ball, and she operated on me AGAIN that same day and sewed all that hamburger back together again and I was black and blue to my pubic bone and I got Tylenol. Plain fucking Tylenol. I was in so much pain I was almost vomiting. It was INHUMANE that I laid in that damn hospital bed barely able to breathe for pain. And the pain lasted for weeks! I'm usually pretty tough but that pain landed me back in the emergency room two days after surgery because I could not move. Could not breathe. Could not blink my damn eyes without daggers of tearing, ripping pain. Next time, I'm going to the tack shed and getting the stuff we sedate horses with, putting it in my purse and if they offer my Tylenol I'll take their damn Tylenol then snort a line of horse meds and not feel a damn thing, for a week. Stupid hospitals. Stupid policies.

Jaycee, I think it is cruel and unusual that they make you go through the whole culture routine and wait and show up for prescription. I reached the point with my endless bladder infections that I said NOT PLAYING THIS GAME ANYMORE! And screeched until doc wrote me a scrip for a big ass bottle of bladder pills and I ALWAYS have some in the house and take one at the FIRST sign of uh-oh. Also, I used to take something called pyridium (spelling?) It is a pain killer mostly for bladders, I think. It makes you pee brilliant orange. If you are a guy you can write your name in a snow bank amazingly well! It does not get rid of infection but sometimes takes away that AAAGGHHH feeling that often accompanies a bladder infection.

But our medical system gets a failing grade for pain management.

Juli24

if I’m not mistaken, the bladder pain killer is now sold over the counter by the name Azo. I used to get the prescription stuff too & couldn’t wait to take it. The Azo is not quite as effective which reminds me to ask my doc if taking a larger dose might help. Knock on wood I haven’t had an uh-oh in a couple of months (think I’ll say a few thank God prayers now). I also found out, the hard way, that steroids will make a UTI even worse. It is insane how much our lives are like walking a tightrope that only we who go thru this every single day understand. Hugs to all

Meow13

I think I can take codine, that one is suppose to cause people problems. I have had tylenol with codine with minimal unwanted effects. I can not take percocet, i will puke, dizziness too.

I had a root canal, first time, dentist prescribed pain meds. I got a letter from my insurance saying how dangerous the drug was. One dose can cause addiction. What a load of crap. I was too afraid to take it. Luckily I didn't have pain from my root canal.

Everyone is a drug addict until proven otherwise, good grief.

I am interested in marijuana put I don't want to get high. I believe one type doesn't csuse the goofy high. I still have uncomfortable nights, joint pain and dreaded ichy skin. I love benedryl but it leaves me groggy next dsy.

marijen

You said it Meow. They give us the drugs after they cut burn and poison and then we are drug addicts. There ought to be an exemption for cancer patients. I doubt the politicians have any trouble getting whatever healthcare they need too.

Lula73

supposedly there is an exemption for cancer patients, but not for surgery for cancer patients. Lumpectomy? That’s nothing...have some Tylenol - bullshit! ORMA is advertising their great new pain management regimen for Natural tissue recon and how after surgery all the women need nothing more than Tylenol. A big part of the regimen is drinking Gatorade right up til you enter the hospital on surgery day. Sorry, I’m not buying Gatorade being a huge pain helper. And yeah all the women “need” is Tylenol because that’s all you’ll write for them. If you refuse to write anything stronger despite the woman being in more pain than Tylenol can handle it shouldn’t count. Wonder how long before someone sues over witholding pain meds or not giving enough for the level of pain/length of pain as cruel and unusual treatment. Pain & suffering monetary awards, anyone

Tylenol with Codeine or Tylenol 3 rarely works well in adults but does amazingly well in kids. I’ll take the immediate release morphine or Norco, thank you very much.

On the bladder infections, Cystex is another good option that works similarly to AZO without turning your pee orange. Works pretty quick and I think it works better than AZO, at least that’s my experience. Uricalm with mannose-D works great for UTI prevention. And for once, it’s a medicine that doesn’t taste bad. They are chewable tablets that taste like Spree candies.

marijen

Lula, is it true that if you get off Norco you’re more susceptible to overdosing if you go back on? I was reading that today. Or is like Meow’s scare letter?

Meow13

My doctor almost fainted when I told her when I stopped exemestane I stopped the paxil. Cold turkey I didn't have any noticable discomfort or withdrawal. I guess we are all different.

I do remember a long time ago 23 years ago after birth of my youngest I took codine for pain. I must have taken another dose too soon and got terrible diarrhea. The meds I had in the hospital when I had DIEP gave me horrible constipation. Ugh, better medicines needed.

marijen

There is a new non-narcotic painkiller coming. I have a link for it somewhere. Until then don’t have surgery?

Afriend told me tonight she stopped lexapro and trazadone cold turkey - no insurance. Didn’t feel better for six months.

Janett2014

Regarding UTIs, I used to get them often. I started taking daily cranberry pills, and I haven't had a UTI since. It might be worth a try.

smwusaf

My sister was addicted to pain meds, it's a horrible, vicious circle and really hard to get out of so I was super nervous about taking the oxy they prescribed after my surgery but I did because it hurt so bad. Then the constipation happened...... I was sooo not prepared for feeling as full and tight as a tootsie roll. OMG that was so painful, I called my sister and asked her how in the hell do you get addicted to that? She said you take a lot of laxatives too...... geez. I am so glad she is clean and sober and that I had no desire to do anything but flush those meds.

I am hoping that my journey won't include more surgery but if it does at least I feel better prepared maybe?

Lula73

The Uricalm with Mannose D for urinary tract health I mention above also contains a cranberry supplement😀

Marijen- can you send me a link to the article you read? I did a quick search but nothing came up.

jaycee49

Lula73, all of the OTC urinary pain relief products are the same ingredient, Phenazopyridine hydrochloride. Azo has one. (They have other urinary products, as well.) Walgreen's has one as does CVS and I use one called Uristat made by the Monistat people. Uricalm is the same thing. Not for prevention. There have been several studies recently that have shown cranberry to be ineffective in prevention. Uricalm may make other urinary products but it's main one is for UTI pain.

Now to burst runor's bubble. If you take antibiotics BEFORE a culture, you will ruin the culture's results. I need accurate cultures to determine what antibiotic my bacteria is sensitive to and what is is resistant to. Sensitivity data run with the culture tells you (and your doctor) that. What I don't understand it that the sensitivity data always list multiple antibiotics that are sensitive but they always use the same few. Cipro causes me major neuropathy. It's a large warning on the label, especially for people with CNS issues. And, I just figured this out: you can have neuropathy in your crotch and butt. Guess what neuropathy in your crotch feels like? A UTI.

goodprognosis

Meow

I think you may be sensitive or allergic to opioids. Percocet contains opioids!!!

I'm allergic to all opioids and cannot take morphine or anything like it after surgery. It's a bitch as they are the best pain killers - of course....

GP

Mominator

Lula, I agree, Gatorade is not a pain reliever. However, through four surgeries, I have noticed a BIG difference in nausea/vomiting depending on how hydrated I was. Maybe Gatorade could help with nausea/vomiting, but I don't remember being in less pain when I was more hydrated. My Gyn Onco told me to drink close to a gallon of water the day before surgery, preferably plain water, not something with a lot of additives in it (so NOT Gaterade). 

Here in NJ there is a big push to solve the opioid addiction crisis.  Very strict rules about writing opioid scripts. The first script can be for up to 5 days supply at the lowest effective dose (even for surgical pain). The second script can not be written before 4 days after the first script, and is for up to 30 days supply. The third script must have a "pain management plan" in place with the script. 

https://www.njafp.org/content/new-prescribing-law-treatment-acute-and-chronic-pain

Goodprognosis: Although they are similar, not all opioids act the same in each person. The few times I've had Codeine, I felt dizzy and worse. My doctors prescribed Vicodin (Hydrocodone-Acetaminophen) after neurosurgery and Percoset (Oxycodone-Acetaminophen) after BMX/BSO. I did well with both of those combinations. 

Meow, anesthesia medications are known for causing constipation.

marijen

Here it is Lula, is Vicodin the same as Norco?

Is Withdrawal Dangerous?

Although withdrawal from Vicodin use can be very uncomfortable, it is not life-threatening. But there are complications that can occur which can be dangerous.

If you vomit and then breath in stomach contents into the lung, aspiration can occur, which can cause lung infection or choking. If you experience vomiting and diarrhea, they can cause dehydration as well as chemical and mineral disturbances in your body.

The biggest danger from detoxing from Vicodin and other pain medicationtakes place when someone decides to start taking the drug again. Because going through the withdrawal process reduces your tolerance for the drug, if you returned to taking Vicodin at the level you previously took it you can overdose. Most Vicodin overdose deaths happen for people who have recently gone through detox and withdrawal. Overdose can occur even at a much smaller dose that previously taken.

https://www.verywellmind.com/vicodin-withdrawal-symptoms-67822

Maybe these people have been on very high dosages

Meow13

Vicoden , I was given that one time NEVER again I would rather have the pain then the dizzy puking I went through.