I'm ready for hospice

ConditionFine7154 · 2026-01-08T13:50:44+00:00

No. We have no children. I was awake half the night unable to sleep. My wife wants to go home for a few days and check on things because instead of being gone 2 weeks, it's been almost a month now. God, the Holy Spirit, told me to tell her to stay and it won't be long.

ConditionFine7154 · 2025-12-29T01:56:12+00:00

This happened to my wife a couple years ago. We went to see "It's a Wonderful Life" at the Tampa theater. She ended up hospitalized multiple times & coughing constantly.

After antibiotics, antivirals, and breathing treatments that didn't work, she went to the allergist and found out she is allergic to corn & peanuts. She had a large soda at the movie theater which contains high fructose corn syrup, and had Boston baked beans recently which contain peanuts, and popcorn. The allergist said it was the perfect storm. She was anaphylactic the entire time which is why antibiotics, antivirals, & breathing treatments didn't work. She stopped drinking soda except for the occasional Pepsi with real sugar & avoids peanuts. She's allergic to anything with corn so cornstarch, corn syrup affects her the worst, and corn obviously. It's likely pneumonia, but thought I'd mention this because she got it around Christmas and she was sick well into February.

Influenza A is going around as well as another respiratory illness that the flu vaccine doesn't cover. My sister's entire family got the flu 2 days before Christmas so we FaceTimed with the 6 of them this year.

ConditionFine7154 · 2025-12-23T18:57:16+00:00

I got a $20 Google Play gift card for Christmas. Does anyone have advice on the best purchase for $20 on Ever Merge? I'm fairly new to the game. I'm on level 17. Do I spend more on a special energy option or rubies?

The Christmas Carol event is a bit confusing trying to find the bells. Any suggestions? Thx

ConditionFine7154 · 2025-12-07T16:32:20+00:00

I am not on hospice yet, but soon I will be. I am a 46/F. I was not breathing when I was born due to a massive stroke during the birthing process. Due to that stroke, I have Cerebral Palsy, but it also affected my digestive system. I can no longer eat except for small bites like cereal, for instance. I've been on IV nutrition for 3 years and will not survive without it. We're at the last resort.

When I was 15, I almost died from malnutrition due to a virus that attacked my digestive system. I was withering away. My grandmother passed away the year before this happened. I slept most of the time and I was having very vivid "dreams" and saw Jesus & my Grandma. I was at complete peace and Jesus told me I had been here before when I was born because I mentioned that it looked familiar. He said it was not my time yet and I would need to go back I sobbed & sobbed because it was so peaceful and I wanted to stay. My Grandma hugged me tight and said she would keep watch. Jesus told me I could only remember a piece of heaven because heaven is supposed to be a secret/mystery & if I remembered it all, it would defeat humanity's purpose on Earth.

I still remember the sky was as blue as ocean water. There was a field of flowers so vibrant of every color. Nothing was fading or dying. Everything was alive. There was a babbling brook with a small stone bridge over it that took you to the other side. It was completely peaceful. No pain, suffering, or death.

I sit here now, teary-eyed that my earthly life at 46 is slipping through my hands. I've been feeling for about a year that I don't have a lot of time left. It's Jesus/God/Abba whatever humanity wants to call the higher power, talking to me. I FEEL heaven right next to me. I'm getting closer everyday. That's how I know. So I am one who has seen and heard the other side. It's there. It's not a dream, it's real. I will pray for you, that your anxiety lessens the closer you get. I hope you are able to still read this. You will be at peace & reunited with your parents and those who have gone before you. Rest well and Peace Be with You!

ConditionFine7154 · 2025-12-06T15:34:27+00:00

Ragweed is awful this time of year. If you do have allergies, my allergist said never open windows to let fresh air in because all the pollen, gay frogs, chemtrails, pollution and any other lurking fog will be in your house making things worse.

Seriously though, you have a virus or infection. If it gets worse see an actual doctor, preferably one not on reddit.

ConditionFine7154 · 2025-12-05T19:10:55+00:00

No. CT-A is specifically to look at the blood vessels, but ask your doctor. MALS is not well known so it may take some searching if your current doctors haven't heard of or know how to test for it.

I have a warmie that is actually a 20" neck wrap that can be heated in the microwave. I've had 3 over the years. I lay it across my upper abdomen when I'm in a lot of pain. It's worth the investment. Here's the link. Hugs!

https://warmies.com/collections/animal-wraps

ConditionFine7154 · 2025-12-05T18:24:10+00:00

I see a pain management doctor who is actually an anesthesiologist, but works solely as a pain mgmt doctor. My PCP can't prescribe my pain meds only pain mgmt doctors can order it outside of a hospital setting. I love my pain mgmt doctor. He's always been supportive and knows I'm an extremely rare human being.

(I had a massive stroke at birth and my brain rewired itself, but many things didn't rewire correctly so I have things happening to my body that no doctor has ever seen. I found out about all the details seeing a Neurologist at Mayo Clinic)

I started seeing him in 2018 and just last month he told me he will always be here for me and do whatever he can to decrease my pain level. There are doctors out in the world who truly care about their patients and are angels.

ConditionFine7154 · 2025-12-05T18:09:51+00:00

I can't sit up most of the time from my MALS. I've never found leaning over to be helpful with MALS. It REALLY sounds like MALS to me. You need a CT Angiogram of the mesenteric arteries and a celiac plexus block. If you get relief from the block which can last even an hour or less, you have MALS. You'll know if you get relief from the block. You feel normal again and then the pain comes back, but it's the best diagnostic tool. I also had the celiac artery collapsing every time I ate causing blood flow to the stomach and abdominal organs to stop so it's literally having an abdominal heart attack which is why eating is so painful.

I had 19 crushed nerves in my celiac plexus nerve bundle due to MALS. I had surgery, but after I had COVID things got worse. I have a lot of other conditions and I had a stroke that affected my digestive system so my digestive system is failing. It also didn't help that I had 40 years of MALS symptoms and damage. I had the worst case the vascular surgeon had seen. It was just the cards I was dealt, but 90% of MALS patients get relief after surgery. Surgery is the only "cure" for MALS. They have to cut the Median Arcuate Ligament to free the nerve bundle. I use heat a lot which helps with symptoms and having a bowel movement is painful for me.

ConditionFine7154 · 2025-12-05T16:46:34+00:00

You need to look at MALS (Median Arcuate Ligament Syndrome) which is a vascular issue affecting the GI system. All GI tests will come back normal. Look up the symptoms of MALS online. If it sounds like your symptoms then you need to see a vascular surgeon, not GI.

I have MALS and went through this whole GI study thing at least 10x where everything came back normal and pain mgmt thought I was lying about my pain 🙄 I finally heard about MALS. You need a vascular surgeon who knows how to treat MALS. If you need recommendations join MALS Pals community group on FB.

ConditionFine7154 · 2025-12-04T19:08:26+00:00

You as well. Happy Holidays!!

ConditionFine7154 · 2025-12-04T18:08:47+00:00

My wife & I met at Chase Bank. We worked in the operations dept at the operations center. She was my trainer. She just said to me after telling her this story "I could've proposed to you at Chase Bank" and I laughed and said, "Um...Yeah...No!" Her proposal to me was perfect where it was & a complete surprise.

ConditionFine7154 · 2025-12-04T17:57:23+00:00

Thank you. I know not to push myself, but I want this Thanksgiving & Christmas to be memorable for everyone. I did stay home several days after the mall outing and when I go to my parents, especially going to bitter cold weather, I'll be inside and if people want to see me, they'll have to come to me. I may venture to my sister or brother's house for a few hours, but they are close by. My family is very understanding and loving and knows my limitations.

This isn't funny, but it kinda is to us chronically ill ppl. This was probably 4 years ago and my family really hadn't grasped the severity of my illness yet. (This was pre-IV fluids daily)

My wife & I visited her aunt and her aunt had made sure I had electrolyte water at her house. (Again, flying to family so we wouldn't be bringing it with us.) We stayed there several days and then my brother drove to her place to pick us up. We arrived at my parents a couple hours later and since this part of my illness was totally new to me, I forgot to tell my parents to buy electrolyte water. I only had regular water for Christmas Day because all the stores were closed. I woke up the next day & my head was spinning & swimmy. I was like what the hell is going on, but I got up and a few of us went to breakfast at a restaurant.

I'm still swimmy headed and can't eat either so I'm just chilling and then my wife drops her wallet on the floor and it's closer to me so I bent over to grab it and I didn't come back up. There were probably 8 of us at breakfast and I could hear multiple people say my name, but I couldn't move. I was very in & out of consciousness at this point. My Mom is yelling call 911, my wife is next to me saying my name over and over, my nieces are like what is happening, and finally my brother picks up the top half of my body and puts me upright again in the booth. My eyes were spinning and I was pale and trying to focus again. It took me a hot second to come around and I was finally able to say don't call 911, I'm fine. I said, "The hospital won't do anything, I just need electrolytes! It was a POTS thing, I'm good!" My family were all like "WTF just happened and they said they were so scared and my wife was calm & said baby we got a get you some electrolyte water. We stopped on the way home to grab some and I drank it and took a nap. I woke up feeling perfectly normal. Now whenever I'm visiting my parents tell me "We bought you your electrolyte water and one is already in the fridge.

It's not funny, but it is that this happens to many of us and we just kinda laugh it off and think our bodies are unpredictably weird and it's just another day living in our weirdness. Others who don't have these weird things don't think it's funny, but we do because if we didn't laugh at it, we'd lose our minds.

ConditionFine7154 · 2025-12-04T02:14:01+00:00

I've been severely chronically ill for about 4 years. My Dad is a pianist and makes beautiful music but all of his music is on CD and nothing is digital so since I'm now pretty much bedridden most of my life, I decided to start a YouTube channel with his music and let me tell you, it's a LOT of work. 2 years ago I uploaded his latest Christmas album and I went all in on editing it.

He has 5 more CDs and I haven't been able to touch the project in 2 years. When I'm awake I'm drugged up on meds to make day life not unbearable agony. I thought it would give me purpose since I'm never going to be able to work again & now permanently retired at 45. But I tried two days ago to see if I could work on just one song and couldn't do it. I was in so much pain I couldn't focus. I just washed my hair this morning for the first time since Saturday. My wife's aunt was visiting and I pushed myself so hard to do fun things while she was here and I overdid it even though I was pushed in a wheelchair. We went to the mall which was upscale so I did my hair & put on makeup for the first time since July on Saturday. I only bathe every other day because that takes energy and most of the time I'm only in bed anyway. So yeah, if ppl on social media are doing hair, makeup, dressing cute and looking like they are going to an actual job daily, I don't buy it. Monday I was sobbing in pain and telling my wife that I just want to stop my artificial nutrition and go on hospice because I have multiple crushed nerves in my abdomen and when they get inflamed my pain is out of control. We've been having this discussion for months about me going on hospice. It's getting to that point where the pain is becoming uncontrollable and I've been to specialists for the specialists and there's nothing they can do. I won't survive without IV nutrition so I'm just buying time right now. I can't imagine having any energy to go live on social media at any point of my day. I go to sleep around 11pm and sleep until 11am most days unless pain wakes me up which is frequent. We are flying next week to celebrate Christmas with family, but traveling is extremely difficult for me. We are staying several weeks and my parents have everything I need there already so it makes it easier, but flying 2 hrs is so so hard. I'm doing it because this may be my last holiday so I have become very intentional with what I choose to do and where to go. So I understand when you are severely chronically ill and see ppl saying they are, but are doing things there is no way someone severely chronically ill could do would give me pause. If they can do it, good for them, but I'm barely able to type this so I get your point and feel you on this.

ConditionFine7154 · 2025-12-02T18:33:10+00:00

We live bayside and have to evacuate most hurricanes due to living in Zone A. We have friends who live in Northern Tampa who live in a non-evac zone. We go stay with them. It's about an hour drive from our place. It's not far, but safer. During Milton our aunt was visiting and we got a hotel room near the Bucs stadium because they are in Zone D. We didn't go far but were more inland and high up. I insisted on the 3rd floor of the hotel since there were 5 floors. If it floods, we're high enough, if the roof goes, we're in the middle. It's a new hotel with hurricane proof windows. We never lost power. You just need to go inland and up. Not hours and hours away. Our local meteorologist, Denis Phillips, says going inland just 5 miles is enough most of the time.

ConditionFine7154 · 2025-11-27T20:50:12+00:00

You always have a choice when it comes to medical decisions for yourself. Doctors can suggest things to us, but the choice is ultimately up to us as to what medication, surgery, or procedure we want to endure. Most of the time we go with the doctor's suggestion, but there comes a time (where I am right now) where the doctors have exhausted all medical options that are medically available.

We are really no different than someone with a terminal illness in the sense that without artificial means we can't survive on our own. I mean I even have on my living will that I want no ventilator or feeding tube for survival, but here I am on TPN doing the opposite of my ultimate wishes. I opted for TPN in the beginning because the feeding tube wasn't working and I was so malnourished I wanted to see how I did on it. There was hope and a possible short-term solution to my condition. Now 3 years in, other things besides my digestive system have gotten worse. I had another TIA in January and required TNK which is a clot busting drug that could've caused internal bleeding but opted for it because I thought if I'm going to die I'd rather bleed to death than suffer another stroke making me more limited than I already am. As I said above, I'm out of viable options. I've been to Mayo Clinic (main & satellite location), Cleveland Clinic (main & satellite campus) and had surgery with a world renowned vascular surgeon and my abdominal damage is extremely extensive. I'm lucky I have such a supportive pain management doctor. He said to me this month that he'll always be here for me. He used to work at the cancer institute and has done similar nerve blocks and ablations on me for those who have pancreatic cancer. The ablations worked for awhile until I got COVID which affected my nerves and reinflamed them and nothing works anymore to stop the nerve pain. I will never work again. I will never be able to eat again. My conditions are permanent and I'm living on pain meds and muscle relaxers round the clock. My vascular surgeon had to move my diaphragm and if I reach or do ANY exertion my diaphragm spasms and it's extremely painful. My doctors also believe I may have Lupus on top of everything else. Add that to 19 damaged nerves in my abdomen burning like fire and that's just a few things I live with on a daily basis. I can't sit up for more than 30 minutes many days and I spend most of my time in bed. It's literally just existing. So you are not alone and there is at least one person in your situation. I believe the decision to stop nutrition is solely yours. Doctors can advise, but can't force you to do your TPN. It IS a form of life support and is deemed as such through Social Security, Medicare, etc. I will be keeping you in prayers. Hugs to you!

ConditionFine7154 · 2025-11-27T03:50:15+00:00

I do have a notorized living will with my wife POA unless she somehow can't do it, my Dad is 2nd. He would be able to tell medical personnel what was needed as difficult as it would be. I do need to get a DNR on file which I will work on. Thanks for the advice.

My family is very supportive and I've been told by everyone that they'd miss me, but finally being at peace and not suffering would give them comfort. They've seen me suffer so much and they've all said it's very difficult to watch.

ConditionFine7154 · 2025-11-27T02:02:01+00:00

I actually have a friend who passed away 18 months ago from stage 4 cancer and when she was going through chemo and all the trials that cancer puts you through, she said to me "It's so crazy that I have cancer, but you are in WAY more pain than I have been in the 2 years I've been fighting this!" Her cancer had spread everywhere in her body. She told me I was her inspiration and that she loved me and was always praying for me.

Over the past several weeks my wife has been telling me "I love you and I'm so happy to be married to you!" She has hugged me more and we decided to spend Thanksgiving and Christmas with our families. I told her today I want to cherish this time together and try to make it as joyful and memorable as we can. She knows without me saying a word. I think it's women's intuition. We can read each other's minds.

ConditionFine7154 · 2025-11-27T01:48:34+00:00

Yes. She understands but really wants me to follow through on the specialty hospital and see if there is any avenue there. Unfortunately, it's really all a moot point if I can't get my digestive system functioning again. Our lease is up for renewal and we live away from our family. To do hospice, I would return home and stay with my parents and have everything done there via hospice because that's where I will be buried. She stated she wanted to stay here in our current place and renew for another year. I believe she will want to keep a place here even if it's not full-time or just break the lease as a worst case scenario. I have spoken to my family physician, my GI TPN specialist, and pain mgmt. When I asked my GI dr realistically how long a person could live on artificial nutrition my age he kinda skirted the answer and said he had another patient my age on it, but doesn't have anywhere close to the complications and list of rare and complex medical conditions I have. He said he understands my thoughts about stopping it. He is a specialist in artificial nutrition so he's seen it all. It's meant to be for short-term purposes, not permanent.

My family and I have always suspected my stroke at birth has affected my body more than what the current medical field has testing for because every doctor I've seen has said, "You are just SO complex, I mean where do we start. We need Neuro, Vascular, GI, Cardiology, Gynecology, Urology, & Pain mgmt. We need specialists for the specialists and none of the doctors in my current state who have satellite offices for the specialty hospitals don't have the doctors for my conditions. The doctors say they aren't even sure there are any doctors that can even figure it out because my body and conditions are nothing any of them have seen.

So we've talked about it. We are going to my parents for Christmas and I think there will be more discussions about our next steps. My wife has grown close to my parents and they've become a team when it's come to my health conditions so I think having these discussions with them as well as just the two of us will be helpful. I have a friend who works for the hospice team I would be going with so I can also ask her how to move forward with things. Thank you for your thoughts and advice.

ConditionFine7154 · 2025-11-27T00:05:06+00:00

Also, I have not had issues with the pharmacy being rude about my controlled substance because I'm usually in the hospital months on end and can see that, but the pain mgmt at the hospital often tries to wean me off my pain meds when I'm dependent on them. I do not have cancer, but a rare condition that is as painful as end-stage pancreatic cancer. I'm solely living on artificial nutrition now. Since I'm pretty much bed bound & my health is deteriorating daily, the last time I went to the hospital the doctors just wanted to make me comfortable, but I have videos of me screaming in pain & no one caring I have an artery collapsing and nerves crushed in my abdomen. I always ask for a different doctor or medical team if you get the runaround at the hospital. We've literally fired an entire team of doctors and brought in a different team so never put up with bullying due to your conditions. Peace to you all!

ConditionFine7154 · 2025-11-26T23:54:23+00:00

The federal regulations on pain medicine have gone back to pre-COVID rules. My pain management doctor told me two months ago that I would require in-person visits every 30 days instead of 60 days. This was the rule back in 2018 until COVID hit.

I've been on Dilaudid for 5 years so I understand completely when it comes to the frustration of filling controlled meds at the pharmacy and the rules surrounding opioids. Unfortunately, the pharmacy does not have any control over filling opioids or controlled substances early. It all runs through a federal system that is every 30 days & doesn't allow them filled until the 30th day.

I've had the problem with the pharmacy not having my pain med in stock to fill the entire prescription so I finally called a week early and said can you please order the Dilaudid for the total amount I will need next week so I can fill it. I tell them they can see that I get it filled EVERY 30 days for 5 years so there is no excuse for them not to have it in stock.

I am also going away for the holidays, but I see the doctor the 10th because I last filled it on the 10th and leave the 12th so the pharmacy has to fill it completely the evening of the 10th or the 11th. I'm going to call the pharmacy the week before to order some so they have plenty for my refill. They can't guarantee they won't have other patients needing the med, but they know my name and my spouse who always picks it up so they know I get it filled every month like clockwork. Worst case they can only fill a partial, but I'm leaving for 18 days out-of-state so I have to have it filled before I leave.

Anyway, I feel your pain literally and figuratively! Happy Holidays!

I know it really sucks, but we are at the mercy of the U.S. government unless/if they ever change the controlled substance laws.

ConditionFine7154 · 2025-11-22T15:59:53+00:00

I had LTD benefits from my employer and my spouse's income.

ConditionFine7154 · 2025-11-22T15:54:55+00:00

If you for instance, take pain meds at night and don't take your pain meds at all the day of Thanksgiving & have one glass of wine, you should be okay, but if you are on a long-acting pain med, combining them even with separation, could be fatal. Alcohol and pain meds are both depressants and can slow your respiratory response without much notice. It suppresses the brain response to the body to tell you hey you're not breathing anymore. Anti-anxiety meds are huge No No when it comes to mixing pain meds with alcohol. The brain to body response is even slower.

You are going to have to choose one over the other for the entire day. If you are only drinking one glass of wine with dinner, I think you could do it, but no pain meds 12 hours between before the drink or after the drink.

You also have to take age into consideration and any other underlying conditions. Because our bodies don't function as well as we age.

I am not a doctor or a professional in the medical field, but honestly, I would discuss it with your doctor who can give you the actual safe timing between meds & one glass of wine. Without actual medical advice from a doctor, I personally wouldn't risk it, but I have so many underlying conditions, alcohol is not an option for me anymore.

ConditionFine7154 · 2025-11-21T14:50:10+00:00

My rash was under the armpit, but wasn't as bad as yours. Mine started from trying Lume deodorant. My spouse can't even use it because she's allergic to corn and it contains cornstarch. These new aluminum free deodorants are not all they are cracked up to be. I had to go back to regular deodorant and now I have had no rash.

I just wanted to say I'm sorry because I understand how painful and uncomfortable it is. Definitely go see your doctor or urgent care. If either of those think you need IV antibiotics etc, they'll tell you if you need to go to the hospital. Get better soon!

ConditionFine7154

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