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When you need a medical break

Posts:796
 

How do you know when you've hit YOUR point of needing to take a break from anything medically related that you can?

I know for me I have to get a better handle on aversion to food/rarely having a desire to eat (sometimes cbd works to stimulate an appetite for me but it can be hit/miss or I have to go up in dosage). The food thing is kind of a necessity. 

I have my one Dr telling me I need to start new physical therapy now. 

I have a test coming up next week that I absolutely hate. 


Before my procedure today the anesthesiologist was sitting down talking with me and when he said I had gone through way too much for someone my age well I didn't cry then but I did later. 
My ptsd was triggered unexpectedly last week and I know this month and next have more triggers for me (most of my triggers are from medical trauma). 
I know I haven't slept in 2 days other than my anesthesia nap today- so I know that influences how I'm feeling.

I went from falling asleep easily to not being able to calm myself and sleep at all.  

A few of the things the Dr told me to cut out food/drink wise for now are literally some of the few things I like daily. And I would like to scream or something about it if I had a voice today. 
I feel like I'm hitting a wall and am so mentally exhausted from it all. 

I'm trying not to say I'm miserable because I have a lot to be thankful for… and a lot to work toward. I've thought about going to visit some friends I haven't seen in a while or something. 

If you respond with something super cheerful you may get a side eye from me right now 😉

But really if you've ever gotten to YOUR point what have you done?

~Jodie 

 
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Posts:487
 

Oh, Jodie, nothing saccharine sweet from me, just a virtual hug because I understand. You HAVE been through a lot and, not only is it understandable to feel the way you do, many of us have been there so a lot of people are nodding their heads right now. I know I've hit my point when it's all just too much, when the anxiety keeps me up at night, when I can't concentrate on everyday things, when I'm gruff. I just say, sure, I'll schedule something but I wait a little until those ptsd/anxiety feelings subside. I feel them all and then I wait for things to subside. I have crummy insurance now and a lot of stuff gets denied anyway. I don't have it in me to fight it so I just let it slide. I still have pain so it's not like anything goes away, but I hit a point where I just can't. Anyway, I understand.


 

I do understand fully what you're going through. I know everything happens for a reason but sometimes I would like a reprieve. And some sign that things will get better.

I tried CBD- it didn't help. I got a medical marijuana card and tried various forms of TCH to help with my appetite. That worked the opposite and made me more nauseous.

Some days I'm depressed, close my front door and just cuddle with my service dog. Other days I'm able to deal with things. I became a YouTube addict and watch videos on various topics. Look up Rxckstxr- he does voice overs for pet videos. My favorite is the dachshund one (good dogs get good treats)and the husky- (I told you I won't shake your hand). He's pretty funny. I also painted a few bird houses and designed them to be unique but that sounds like a “grandma” thing.

I've had tons of surgeries and procedures all my life. But I tell myself I need them to live so I can watch my 2 year old granddaughter graduate from Harvard!! 
Hang onto faith. Everything is temporary. Hurdles are placed in our lives to make us strong enough to fly right over them. 
Or you can go to Walmart and watch some of the people… take someone with you to verify what you just witnessed…

Posts:139
 

IMHO The feelings you describe sound entirely human and normal to me.  I think we all have days or weeks or months be honest I had a whole year like that I had to put my husband in a nursing home for Alzheimer's on our 35th wedding anniversary I was useless for a year.  So those of you who have a day a week or month my hat's off to you.  Laying in bed and not taking care of myself contributed to the kidney disease that put me where I am but... It didn't kill me I don't think I wanted it to but I just didn't want to deal.  With any of it.  I believe it's entirely normal to feel that way some of the time I think maybe perhaps I took it to an extreme but can't fix yesterday I can only change tomorrow.

Zen hugs to you in our family we have Zen hugs described here in an excerpt from a book my husband loved

They came from an old book "The ship who searched"


"The screen flickered and went blank; Tia sighed with contentment. Lars had been the one to come up with 'Zen hugs', 'the hugs that you would get, if we were there, if we could hug you, but we aren't, and we can't'. and he and Kenny began using them in their weekly transmissions to Tia all through school. Before long her entire class began using the phrase, so pointedly apt for shell-people, and now it was spreading across known space. Kenny had been amused, especially after one of his recovering patients got the phrase in a transmission from his stay-at-home, techno-phobic wife"

Posts:796
 
Reply to eefyjig

Oh thank God for nothing saccharine sweet, that made me smile for real. 
I just sent the last appeal I can for a 3rd party to come in and make a ruling about seeing the dietician who I worked with for a couple years literally til the day he came to visit me in the hospital before we realized the insurance was refusing to cover visits with him b/c I'm not diabetic. One thing I don't have 🤷🏻‍♀️ I think sometimes with some of these tests that I've been through before, it can be worse for me leading up to it if it wasn't a pleasant experience the first time. Like the one where I have to eat radioactive eggs next week and keep it down for 4 hours. I feel like a need a coach with me saying don't throw it up lol. Really hoping there will be therapy dogs but nuclear med is in the basement and idk if I have to stay down there the whole time? It's been 10 years since they had me do this test. Today when I was scheduling it I told the lady on the phone just tell me where to park that's what my mind can handle today. I truly appreciate you and your understanding and kind words 💜

Posts:392
 

Hi there,

I have hit that point many times in the process of them trying to figure out what was wrong ,it was very long and grueling and anxiety ridden and days I was completely beside myself balling my eyes out. The way I got through is with God ,  and his strength pulled me through, prayer and hope .Along with my mom who has been a huge support through over a decade, lifted me up wiped my tears. If it wasn't for God and my momma I would have lost it completely 

Posts:796
 
Reply to Ostomate & woundr

I can't even imagine the pain you went through having to do that on your 35th wedding anniversary. I know Alzheimer's and dementia are different (no details off the top of my head) but they are cruel diseases. My Grandma that I was named after had dementia. She and I had a deep connection and watching her to start to forget broke my heart. I remember even as things were getting bad she could sit down at the piano and play beautiful songs that somehow stayed in her memories. I had a sense when the Drs had given her about 8 months or so because of a cancer too that it wouldn't be that long and I called my mom and told her we needed to go spend time with her. So I packed up my toddlers and drove from Ohio to pick up my mom in MI and then down to Chicago. I wanted to see her while she still remembered my name. The day we were leaving she and I stared at each other for a long while like each of us sensed it would be the last time we would see each other. Within 2 weeks she had fallen and broken her neck and was gone. I joke now about going with what guts I have left but there's those feelings you just can't ignore. I don't think you can place a timeframe on your grief. I've had to keep going because I have younger kids. There's a lot I haven't had time to fully process like we had been so close to bringing home a little boy with special needs home from Colombia. I really thought I could make it work to go get him in-between my 2 surgeries last year. Then we found out about some behavioral issues we had not been told about and that was a deal breaker from how he could hurt me if I had to do a restraint hold or if he acted out against my daughter. I got home from the hospital right in time for Thanksgiving and I was pulling down shirts I had ordered for the kids forgetting I had ordered everything for the holidays in triplicate. Having that extra shirt fall down on me hit me like an emotional ton of bricks. And then immigration didn't care what I'd just been through and you have to meet their deadlines even though I had wanted the rest of the year to take a break from the adoption process. My desire to adopt hasn't changed b/c I'd be a high risk pregnancy if I could get pregnant at all. I've been looking on the waiting child site with our adoption agency tonight. I don't know if staring at all these kids that need families make it better or worse? But in one way it reminds me of a purpose I need to work toward. 
Thank you for sharing some of your story and about zen hugs 💜

Posts:796
 
Reply to Anonymous

My Dr had advised me against medical marijuana because it might come up somehow in the adoption process 🤷🏻‍♀️. I did talk to a pharmacist who told me what ingredient needed to be in the cbd to create the mindless eating but I couldn't get myself to eat anything last night or today. I've been drinking a lot to stay hydrated til a craving hits. My Dr has me trying some shakes but I was having trouble keeping even one down yesterday. I call going into a Walmart purgatory. I don't think I've been inside one since my most recent surgeries. I've been doing pick ups or when I couldn't drive did Walmart + for grocery delivery. But seriously you could sit out in the parking lot and people watch there for hours and not be able to make up half the stuff you see. Thanks for the reminder of places to look that can make one smile/laugh 💜

Axl
Posts:399
 

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Posts:1298
 

Posts:1589
 

Oh, I so know where you are at right now, and my heart goes out to you.  I went through two years plus, of nothing but surgeries (four), emergency visits and hospitalizations (over a dozen in total) and medical appointments.  I was constantly suffering from lack of sleep, stress, pain, fear and confusion of not knowing what was happening to me.  I often felt depressed, and didn't want anyone trying cheer me up.  I was reveling in my misery at times.  Things did get better.  Hang in there.  They will for you too.  In the meantime, just know there are many of us out here cheering for you.

Terry

Posts:796
 
Reply to delgrl525

Thanks Terry 💜

Posts:541
 

Hi Jodie

I hope you are feeling a little better today. I'm sure we have all hit the point  once or twice so don't give yourself a hard time. You have many friends on this site who are sending lots of love,hugs and prayers your way. XX 💗

Posts:796
 

The shaking when I first get up is the worst… not sure sure if it's adrenaline trying to help my body deal by itself? We know March-May & September are trigger times for me. We used to try to plan trips those months which seemed to help but with my kids being school age now we haven't done the trips in a few years. 

Posts:165
 

I wish I had the problem of not feeling hungry. I feel hungry all of the time even after eating.

Hope you feel better soon.

Posts:796
 
Reply to Redondo

It'd be nice if we could meet somewhere in the middle with appetite 😜

Posts:796
 
Reply to eefyjig

Thinking about you my fellow migraine friend while I get my Vyepti infusions today. 

Posts:27
 
Reply to Axl

Love it!  

When I have had enough and want to get away from everything medical, I schedule a vacation day and do just that.... I can't distance myself from this crazy bag, but I really work not to focus on it for a whole day and do something, lots of anythings that will make me feel free and wholly myself. 

Try to give yourself time to even feel well enough to do this... for a long time I just had to lay in bed and day dream about what it could be like.

All this sucks for all of us and certainly have my moments... you are in good company here!

Posts:796
 

I think I've sent 3 messages to my poor GI Dr this week really trying to get out this test Wednesday. I know the root is fear of not wanting to do it b/c of how bad it was 10 years ago and I really really don't want the diagnosis to come back stating I have the condition he is testing for. I didn't even know this test was a possibility til last week because he had mentioned a much easier test previously. I really don't want to throw up the radioactive eggs b/c I really really don't like throwing up. But the Dr told me to please try my best to get through it. Hopefully tomorrow will be a better day than expected ☺️

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