Angry and Frustrated

The current situation I find myself in is just all kinds of sideways, and it is depressing the heck out of me. For starters, I had the locks changed on my house today, and would not let any of mum's family gain entrance. I had to call the police twice because the two aunts from Hades, just stood outside beating on the side door. Good luck, it's made of solid steel, with a reinforced frame.

There is that, then I am having to take pain control, which I have never liked. Some people seem to get euphoria from it, I get a stomach ache and can't stay awake. My oncologist is wanting me to transition to 0.75 mcg Fentanyl Patches, instead of the Morphine SR. That stuff is not even a real opioid, it is made synthetically in a lab. You can't turn on the news without seeing how it has wiped out a bunch of people. Plus those patches last for 72 hours and I don't want to sleep all the time. I feel shame that I even have to take any at all, when I take meds, there are so many of them now. It is like, "One Flew Over the Cuckoo's Nest."

I feel useless, the simplest of tasks now just completely tires me out. I am a two shower a day guy, and even with a rail and a stool; help from a nurse if I need it. The heat of the water pulls blood from vital places to the surface of your skin, I have had a heat stroke so I am very sensitive to temperature. I can't stand to be cold, I have to nap everytime after I take a shower. I live out in the country and there is a church, about 750 yards down at the beginning of my road. I was walking there and back several times a day for exercise. Now, I can't even make it down there without feeling dizzy or feeling like I am going to pass out. I got the gumption up earlier to make myself a good dinner, the nurses I have hired cannot cook worth a flip, and. my partner would burn water. So, I fried some catfish, made homemade mashed potatoes, broccoli with cheese and some hush puppies. I had to take a nap after doing all of that and cleaning up, I was so out of breath.

My oncologist, who I will just tell you his first name is MItchell, (He won't call me doctor so I won't call him one either), but I do have other things I call him. He says oxygen would not do me any good as I simply do not have enough alveoli in my lung left to pick it up. I am 53 man, survived years of CSA, three combat tours, mum's family, a botched gallbladder surgery which led to pancreatitis. Got shot twice in the military, and have fought all of these awful conditions that come with it. I am not going to win this time, the moment draws closer for me to step off of the battlefield. It really sux, oh, and I have Afib, the beta blocker that controls that is always making me fall. What's up with this crap? I have tried to be a good person, that has made little difference. Sorry, for the rant I just get so frustrated.

@16PennyNail it sounds like you are a very talented person cooking your own meals. Sorry it tires you out. You have a lot of stamina to keep going.

Hope you can teach those nurses how to cook. I am not good at teaching cooking to my partner who is a confirmed "microwave queen." Needless tp say I do all the cooking.!

CANDC

[If you want me to see your reply to this post please include @CANDC in your message - not in requoting my message]

Penny nail I was on a lot of pain meds at one time. Including fentanyl patches. I don’t recall the doses but they helped the pain without other side effects. I was able to move and do stuff. Of course everyone is different. I was able to make use of a heated swimming pool for physical therapy. The buoyancy of the water was very helpful.

I’m sorry your aunts are making your life difficult at this time. How rude.

Food is one of life enjoyments, good for you for making good food. Yeah, none of the aids I hade could cook either. Can you maybe hire a chief?

Take care.

You're up against a rough situation to be sure. I'm sorry the help you're getting isn't more helpful. The dinner you made sounds nice. All you can do is take it one day at a time.

Maybe the Fentanyl patch will work out for you. I think you should have a say in the choice of an analgesic. Lets us know how the change goes, if you do have to make it. The walking is good, if you can do it. Maybe have someone walk with you, taking along a wheel chair, in case you weaken during the walk.

It sounds like you've not lived a dull life. I'm sure you had different expectations of what age 53 would be about. Instead, fate has been cruel. Keep being the kind of person you've chosen to be. I think there can be quiet victory in that . . . in a certain stubborness that says, "I won't be defined by what has come down on me that I can't change. I will still be who I am." The people you interact with are affected by who you are. It still matters that you strive to be a good person. I'm wondering if you have any supportive friendship in your life? I'm sorry you have relatives acting badly.

Check your labs for any indication of anemia. As you know, that affects how much oxygen gets to your muscles. Check ferritin and iron levels. Those are not optimal in lots of us. I got I/V iron infusions last year to bring up my iron levels and treat my anemia. That greatly improved how I felt. I know what being under-oxygenated feels like. I too was told supplemental oxygen wouldn't matter. In my case, there weren't enough healthy red blood cells to carry extra O2 to where it was needed. Practice good bowel hygiene. Opioids really slow down the gut, as you've probably experienced. That can add another layer of misery. I'm on Vicodin (hydrocodone) and have found that MiraLax is great stuff.

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There is that, then I am having to take pain control, which I have never liked. Some people seem to get euphoria from it, I get a stomach ache and can't stay awake. My oncologist is wanting me to transition to 0.75 mcg Fentanyl Patches, instead of the Morphine SR. That stuff is not even a real opioid, it is made synthetically in a lab. You can't turn on the news without seeing how it has wiped out a bunch of people. Plus those patches last for 72 hours and I don't want to sleep all the time. I feel shame that I even have to take any at all, when I take meds, there are so many of them now. It is like, "One Flew Over the Cuckoo's Nest."

Just wanted you to know that the fentynal patches gave me my life back. I had 24/7 migraines & couldn't get out of a dark room. Neuroligist thought the neck fusion would fix the migraines but it didn't. That was when they started the fentynal patches. 200ug/h was what it took to control the migraine pain. No side effects, just pain relief so I could start functioning again & riding & showing my horse in dressage again. It gave me a functioning life back. Was on it for 20 years with no addiction. Yes, the body gets "dependent" (in that withdrawal happens if suddenly stopped). After that long, I spent a year lowering the dose each month & was finally able to stop using it & no migraines came back....miracle.

I found that the Johnson & Johnson (brand name) patches worked where the genaric ones didn't for me. Johnson & Johnson had (may still have) a patient assistant program which I needed since the cost of that dose of patches was $3500/ mo.

Huge difference between the pharma patches & "street fentynal" that is killing so many these days. I was so thankful for the help it gave me in getting back to a functional life with no drowseyness. We all have different reactions to meds. I can't take any morphine or its derivitaves because they cause me to itch all over. From my experience it is worth it to try & see. If it helps great, if not, you really haven't lost anything trying.

Ugh, your family sounds like a nightmare. Why would they do that in the first place. Take care

Well, it sounds like when it rains it pours, to say the least! Three combat tours?! So, you you're amazing first of all. Sorry to be judgmental there. Anyone who survives that deserves more than my respect.

As for those pesky opiates and patches. ONLY speaking from experience, careful in the shower...I found out the hard way that if they are on in the shower, the heat from the water, can cause them to release the medication at a different often quicker rate than expected. So, just a heads up. I have a spinal disorder, so just wanted you to know.

Also, gallbladder surgery here too. Don't know if mine led to an infection yet, because we are still waiting on the blood cultures.

My main point is to be here to support you, and welcome you to this site and the forums. There are a lot of awesome people here. We are all going through something. It sounds like no matter where you are on the battlefield, you've got a squad here that has the light on for you. I can't imagine how awful or painful your conditions are to deal with all at one time, but please keep holding on! People living through hell give one another hope, and sometimes that is all we have. You know how it goes in uniform (sorry I don't know your rank), we don't have permission to quit do we. lol.

You ARE a decent and good person, life just makes no sense sometimes. Cheers to you even if you are going through anger and frustration! HUGS!!

It sounds incredibly tough, and I admire your strength. Have you considered exploring mental health services? They might offer valuable support during this challenging time. Your resilience is truly inspiring. Wishing you all the best and hoping you find the support you need. Stay strong.