Newbie Intro (Fighting smoking and dehydration while in chronic pain)

140 characters are inadequate for my intro. I’m very dehydrated — prefer Cokes over water but am working with myself to overcome this. I am taking Chantix to stop smoking. I did well and was smoke-free for a couple of weeks, but receiving the COVID-19 vaccine stressed me out too much. So, I must clear my mind and recommit to that project. I would like to have my life back. If I could stay off the cigarettes and improve my GFR which has fallen to 46 from 59 in six months, I believe that I could live another ten to twenty years. It’s shocking to think about my age. I’m suddenly 69. Appearances deceive. My photo here is from a set taken for the last art exhibit I allowed, 2015 when I was awarded a Distinguished Artist Award.

[Hidden]

Hi and welcome to the community.Dark colas and smoking! You're ahead of the game if you know those things are bad for your kidney health. Now you have to stick to a kidney-friendly meal plan, exercise (whatever your physician[s] approve), no NSAIDs, and control any underlying health conditions like hypertension and diabetes. I'm also 69 and have no intention of giving up a lifestyle that I enjoy. I'm doing everything within my power to stay off dialysis for as long as possible.

It requires lifestyle changes and a major commitment on your part. There is no cure for CKD, so you can only hope to slow the progression. Water is the best way to stay hydrated and to help cleanse your kidneys. Have you met with a nephrologist yet? How about a Renal Dietitian? If you haven't, then do so as soon as possible and follow their direction. You are in charge of your health care so be proactive, learn all you can, and stick to the recommendations from your Care Team.

Best of luck.

[Hidden in reply to Hidden]

Hi, Hidden! Yeah, even ten months later, I’m still fighting the battle of smoking and dark colas. Strangely, this morning, I set on my Calendar app a date to quit the cigarettes. I haven’t been here the last ten months. I don’t appear to have mentioned in my intro that my worst problem is chronic pain, hitting levels 7 and 8 every day. Throw in meds for narcolepsy and depression. It’s rare that I feel overwhelmed by the many medical conditions that my bad habits have worsened, but I feel it right now. I dissociate a lot so that I don’t feel as much pain. That deadening of myself, though, keeps me from any interest in food or ever feeling hunger.

I’ve been seeing a nephrologist since I first brought to the attention of my primary care physician that some of my blood and urine tests seemed to have pointed, to me, some possible renal problems. Had I not found that, I would have been one of those who find out too late. Like you, I believe in being proactive and was at that point. I have no energy and am in a great deal of household problems because of it.

Prior to my husband having to have both hips replaced, he did excellently at cooking for me and, in fact, was responsible for raising my GFR to 59 through it. My energy was higher during that time and I was able to help him through his surgeries. It is only recently that I’ve been able to persuade him to cook, once again — for we’ve been through this repeatedly…. He’s turning 80 in February and is still carrying a full-time university class load — 55 years of professorship, but he doesn’t seem to want to retire. He’s also just now doing the final cleanup on his more-than-300-page new book. His mind is more focused on his life than mine.

I’m doing the best I can. The chronic pain is the medical problem that screams the loudest at me.

Thank you for writing, Hidden. I have been feeling totally alone in all this. It doesn’t help that the pain pushed me out of the world, allowing friendships to dissolve over time. They weren’t lifelong friendships, so there wasn’t a lot of meat to them to last.

[Skeptix in reply to Hidden]

Hiya,

The only folk I know who didn't find it falling-off-a log-easy to quit smoking with Allen Carr were those who didn't read (by which I mean actually read) his book.

A single copy went through my families household when I was in my mid-twenties. It went out to friends, boy and girlfriends and beyond. I lost track of the book after counting 15 folk I knew who'd stopped after reading it.

Of that 15, only one dummy (me) fell back into the same pit. And that was because I ignored his pretty simple instruction not to put nicotine into my body now that he'd freed me from it. I smoked a joint after 5 years of having never a thought about cigarettes.

What was in the joint along with the weed? Tobacco is what. I came back from that two week holiday with 200 duty free in my baggage. It took another 2 years before I'd pick up the book. Made the same mistake a few times (joints) but am a happy non smoker.

If it seems hard or requires willpower then it's doomed to failure. Allen has the only way. The easy way. Even for dummies like me

It really is the kick-start. There ain't no climbing to health when smoking is in the frame. But once it's gone, the rest will get going.

[SkiingSailor]

Welcome and Great advice from Mr Kidney ! Only you can slow this down. Read as much as you can. I advice an enormous book called Stopping Kidney Disease.... that should help focus your mind on what you have to do, to help yourself. But basically cut meat out of your diet and definitely the cola. Eat as much veggies s as you possibly can . Joe about getting a soup maker ? I just bought a second hand one of Facebook Market place for £20 ! Life changer ! Keep in contact, you’re in the right place !

[Hidden in reply to SkiingSailor]

Hi, SkiingSailor! My apologies for my ten-month delay in responding. I had actually even forgotten this site until I saw a notice which led me here.

If it is totally up to me to slow down the progression of this kidney disease (did I mention that only after I studied my own test results were my renal problems even brought to the attention, by me, of my primary care physician? who sent me then to a nephrologist who discovered I’d been born with what he called “a solitary kidney? as it turned out, one of my kidneys was only 1/10th the normal size, the other was larger than normal to try to compensate for the other, and both had been severely scarred and messed up in ways I’ve forgotten?). A massive derailment there —-

To start over, if it’s totally up to me to slow the progression of my kidney disease, then I have no chance at all. I mentioned in my intro that 140 or so characters was not enough space for a proper introduction.

Actually, as I explained to Hidden, it is the chronic pain that I have to deal with daily that has already kind of taken me down. With the 2016 CDC change in allowable MME’s for opioid-naive patients, that limit became pretty commonly, I hear, applied also to long-term chronic pain patients who had been on higher dosages before the new limits came out. My pain specialist, on my first day there after my primary care physician was no longer allowed to prescribe to chronic pain patients, cut my MME’s by 44%. What had been carefully titrated up to be the safest but still most humane dosage by my primary care physician was thrown out. We had come to that amount of medication as one which would allow me to stay a productive member of society but still did not take away all of my pain. It was a bearable pain level. But, once at a pain clinic, my life was pretty much over.

I can’t even take care of myself anymore. It’s been more than three weeks, at least, since I last showered and washed my hair. I cannot care for the house, the yard, anything. I only go out to doctor’s appointments and then hurt worse for two days because I had to wear street clothes instead of only wearing a loose nightgown every day. I’ve now reached the tired point. Too, as I mentioned to Hidden, I’ve become one of the chronic pain patients who are forced to simply dissociate from life during the daytime hours.

I developed a dislike for meat back in 1980 as I was driving from Evansville, IN, to LA. I passed what was a stockyard or something. Cows packed into small areas together, and I’d swear it looked to me as if a crane of some kind was lifting out a cow by one of its hind legs. I surely saw that incorrectly; surely that can’t even be done to a cow and it survive. When I saw how inhumanly we treat food animals, my stomach would just turn at the thought of meat. So, meat restrictions are not an issue for me. What is an issue is how to get proteins into me. Since I don’t feel hunger due to the dissociative periods, again, I have no interest in food.

My husband, age 80, is once again beginning to start trying to cook for me. I don’t have the energy to even go to the kitchen for more dark beverages and water. I’m now going less dark and more water.

I do have the very book you suggested, but, as with all new books I’ve ordered on the subject and about other health issues I have, I can’t seem to read any of them. I was once a very avid reader, but, in 2007 when I had to move here to the Piedmont of NC from West Palm Beach after only having been there for 11 months and then left there on my own for four months or so while my husband moved here to teach and to find housing for us — wow, overly long sentence — the narcolepsy I had inherited through my paternal line went from moderate to over the edge. I have since had trouble reading much of anything without having a sleep attack. My husband is more involved in his own life. Occasionally he links in with the seriousness of all I’m dealing with and moves to action. I think his being 80 years old is a hindrance.

He did cook an excellent chicken soup a few nights ago but did not do as I’d asked him to, which was to double or triple the batch so that we could eat on it for a couple of days. As a result, the next day which was his long day at the university there was no soup. I accepted the idea of Subway sandwiches and ordered the Turkey and spinach wrap — hold the tomatoes, please. I try to make as healthy decisions as I can when he gets that tired.

If only I could have back my primary care physician’s prescriptions for the amount of pain meds I need. It takes more of them to help neuropathic pain patients, and I’ve got two sharp-pointed pieces of discs (broken off during surgery) hitting an especially-sensitive nerve in my sacral area. The last surgeon I saw was the first to ever find them but he told me, “If I cure you, don’t tell anyone my name because I don’t want to become known as one of ‘those’ kind of doctors.” Shame on me for being a woman!

I don’t know…..

[SkiingSailor in reply to Hidden]

Wow - you sound like you’re in a pretty bad place. Can you get another doctor to see you ? Sounds like the pain clinic wants you keep you in pain. I’m in the U.K. and while not perfect by any means you can get referrals to other physicians etc

[Hidden in reply to SkiingSailor]

To listen to my pain specialist, all US doctors are prescribing pain meds across-the-board according to the limits set up for first-time opioid-naive pain patients. I have read the letter sent out from the CDC telling doctors that they misunderstood the restrictions that they’d sent out, but, when I brought it up to my doctor, he just kind of pushed it away as a topic. Instead, he began talking about all the raids on doctors’ offices, how so many doctors had lost their licenses because they didn’t follow the rules, stuff like that. Here, too, there was a fairly extensive form I had to sign — something about which I later felt as though I’d signed all my personal rights away. I may well be wrong, but it seems to me that “doctor-shopping” was even against the rules. I was not given a copy of what I’d signed. There is also the fear of being fired by your pain specialist, especially if it leaves you suddenly without medications for the next month. My appointments are always set up to come near the end date of my current prescription. If one gets fired by their pain specialist, that person may only have 24-hours between the appointment and the new electronic prescription date that now will not be sent out. It’s a matter of always making sure you’re squeaky-clean insofar as your labwork showing no abusive usage and your pill-count always as accurate as possible.

[drmind]

Try to get back on track with stopping the smoking. From what I understand, it is extremely difficult to do. But, you were able to do it for a few weeks so i think you can succeed if you keep trying. Now, about the colas: most kidney friendly diets suggest thst you dont drink dark colored sodas, so thats another habit you have to try to change. Perhaps trying another light colored drink like ginger ale or 7up along with water would help at first But, I suspect you're also enjoying all that caffeine in the cokes. Can you switch to some caffeinated ones slowly?

Everyone is worried about covid and the vaccine, but isnt getting the vaccine alot smarter! I kind of worried about the side effects of getting my shot, but i got the shot and only had some minor achiness and tiredness.

Be kind to yourself and try to do what you have to do to change the habits that are impairing your health. Start slow and keep starting over if you mess up. Its not uncommon for people to succeed only after multiple attempts at trying. Hope you can see that light at the end of the tunnel and find the strength to keep trying. Keep us posted about your journey. We care.

[Hidden in reply to drmind]

Hi, drmind! Thank you for responding to my intro. If you read all the above, which I assume you can, you surely already are aware of the complications here. I hope that it doesn’t sound like I’m making excuses for myself. It truly is a matter here of simply making it through another day each day.

Quitting smoking is always on my mind. Some days I do wear a patch, and it’s remarkable how well they work. I have trouble sticking to a new routine. There may be three to four times a day that I know I should get up and put on a patch, but too often my husband comes home from work on his short days and finds me unmoved since he left for work. I’m paralyzed a lot. Yesterday was a better day. I did have a patch on and accomplished more. Today I do not and have not moved from my chair. That is clearly my fault, I realize now.

I was six months off the cigarettes due to the Chantix, but then some people began getting cancer from it and it was taken off the shelves.

My therapist and I discussed my need for cigarettes and Coca-Cola. I have been in therapy most of the time since I was 23, and I have not had a single therapist, including my current one, who has even supported the idea of my quitting smoking, despite my wanting to. Both make my brain feel better. With the loss of the pain meds I need came the end of the other thing which made my brain feel better, and that is my work. I have my Bachelor of Fine Arts degree in Drawing and my Master of Fine Arts degree in Painting. I did my last work in early 2016 right before losing the 44% of my meds in March 2016. When I’m painting or drawing, I do not smoke. When I’m writing, like now, I smoke and do so excessively.

We have three houses on the property, two of which are mine — one a home, the other is my art studio. How I miss the days of my working on paper stapled to a plywood board and how I would work the drawing from each side of the board. It was nothing for me to flip my heavy boards over in the air and place them back on my easel. I have a large canvas that I made from scratch sitting on my easel now for the last five years. My cabinets and closets are full of supplies. I’m just lost among the kidney thing, the pain thing, the COPD thing, the narcolepsy, sleep apnea, the fatigue, the other sleep disorders. It’s best I don’t even think of such matters. How does one reconcile them by basically oneself? My husband always falls back into the fast food thing. I certainly cannot fault him for that.

Oh, I got both vaccines — Moderna. We had scheduled ourselves for the booster shots even, except the day of them the pharmacy called and had to cancel our appointments because they didn’t have enough staff that day to do them. We had arranged for our flu shots and the Moderna shot. The system has changed now, and, with my not having showered in three weeks or so, a spur of the moment appointment doesn’t go well with me, though I have thought about showering and then going to my iPad and sitting there to find out I have to be there in 15 minutes if I want a shot. My husband is the one who navigates the world, always wearing a mask. Aside from doctors’ appointments, I stay “hidden” too. (No offense, Hidden, it just worked nicely. I like your screen name!)

Thank you for your part of a larger caring, drmind!!! That is the most soothing of sentences! My life was once very full. When I fell in 2011 (I had written the dates wrong earlier. I had one injury each year and 2010 was the year of my second macular hole. That happened during the drawing class I was teaching at the same university my husband is still with. I had taken my students to the quad to teach them landscape drawing, and, oops, there went my second eye! In 2009 I had my first macular hole just a few months after a team of us had gone to the gallery in Charlotte’s historic art district, NoDa, to take down my art exhibition. Within days of that, I saw the shadows in my eye and spent the next few months going through all the intricacies of having such an eye problem. Then in 2010, I had it happen during class. I should have taken that as an omen and quit teaching there completely because the next January (2011), I was leaving my house with my syllabus and oil painting supplies — it was the first time in ages that the university was able to offer oil painting since that was my MFA major. Except there was ice on the driveway, and down I went, landing in a sitting position, totally unaware that I’d just squashed my spinal column together. I made it through that year on aspirin and Tylenol until I could barely walk anymore. I had shows lining up in good places. Time to close down my mind. Life was so well-lit at the time. I want to work again. I forewent children for my art; my soul was interwoven with my art. Bad choices, I’d say! Such is life. I remain happy and cheerful. Humor is good for the immune system.

My best wishes to you, drmind, and my thanks.

[drmind in reply to Hidden]

Hang in, there. Looks as if life has been dealing you a lot of blows. However, from your comments it seems as if you're doing ok with the results. Actually, you dont have a choice, do you. Sometimes just hanging in is all we can do. Peace and the best good wishes for some good luck soon.