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Posted 7/7/2015 6:38 AM (GMT 0)
The pain is winning. It is currently undefeated.
Pain has ruthlessly defeated:

Optimism
Positivity
Hope
perseverance
patience

and other weak opponents

A few times a year, no matter how hard I try, I find myself hitting a wall. If not a wall, I feel like I fall down a hole. I can almost see the ladder, or the rope, needed to save myself-but it's just out of reach.

I just feel defeated.

Last week I saw my pain doc for TN blocks. In addition to having TN from the replacement surgeries, I also have an issue with sensation. If I close my eyes a person can touch my chin, and I'll feel it up by my eye. While it's a cool party trick, I get headaches just trying to figure it out. The blocks help with the lightning zaps of the nerve pain, and help with the crossed wires. Anyway, I'm an oddball, so my Dr pulls in every nurse and Dr that he can into the fluoroscopy room. Ooooh, aaahhhh, wow…I get it, I was a teacher. My head looks like the Terminator. One med student counted 18 screws, another wanted to talk about the screws that I had in both my upper and lower gums which were used for scanning alignment. Not complaining because I want sympathy, but I'm tired of being a trick pony. Of course, I'm always asked before my Dr rounds up the troops. It is a teaching hospital so there are always fans in the room, but I'm asked before the crowd forms. For some reason, last week, I had the thought that I'm always going to be "that patient".
The one who is always in the hospital. The one that the med students are assigned to so they can learn something. The one the student nurses ask to have and I often end up with 2 or 3 a shift. The patient that Drs hug and ask if we can say a prayer together. The patient where the ER doc asks what do I want him to do, which meds and what dose, and if I want to be admitted.

And, what scares me the most, makes me frustrated, scared, and hopeless: "That patient" who will always, and forever and ever, be in PAIN. "That patient" who desperately needs, and is grateful, for the support found in this community. "That patient" who needs people like you who understand, and who I can find strength in the way you handle your pain, and can rise above it.

It's late, and like most of us, sleep is hard to come by. I just hurt. My bones ache, my joints throb, my eyes burn, my stomach kills, and my throat/chest are crazy tight(where it was dilated due to swelling from a Nissen surgery). I've lost close to 65lbs due to swallowing issues, nausea(can't throw up cause of the Nissen), and stomach pain.

I'm pretty much just DONE.
I'm sorry guys. I'm incredibly blessed with great Drs who bend over backwards to help. I have awesome family and friends, the worlds most incredible kid, but PAIN always wins.

I HATE it!
I was diagnosed so young I can't remember life without it.
I am so afraid that I'll always have a life with it.
It's like my companion that I can't separate from, I can't divorce, and I can't walk out on.

I had a marathon text session with some of my Duke crew. I've been on pred for the last decade, but I'm going to do a 2 week course of solumedrol. Since it's IV, there will be no question as to how much I actually get. Right now, my next appointment where I see the whole crew, isn't until the first week in September. I'm hoping to be able to make it that long. I am toeing that hospital line, and I'm sure I'll end up inpatient here for iron or nutrition, but hopefully it'll be a quick admission, and not a Duke transfer. Palliative care will be reviewed, but I'm not sure if it will be continued. My Drs have a few ideas, and insurance will not approve them if I'm still under the palliative care umbrella.

Please cross your fingers for me and hope the nerve blocks help. Hope that we can find a way for nutrition orally so TPN can be taken off the table. 65lb weight-loss sounds like a lot, but being on high doses of pred for 10+yrs resulted in Cushing's and the lovely "comfy cushing's chunk". I gained quite a bit, my high around 240ish.

Please just cross fingers and hope for the pain to lessen-for myself and all of you.

Thanks for reading the novel. It's late, still can't sleep, so I guess I'll read a novel written by an author other than myself.

Becky
Posted 7/7/2015 9:16 AM (GMT 0)
All this time and I don't think I ever knew your name but sorry it just doesn't work for me. Rocck does because I have always thought of you as solid and tough. You have been through some extremely difficult times and I feel you have actually won more battles then your giving yourself credit for and that score is what leads to hope,you having wins on the board let's you see that yes you are stronger than the shadow always lurking and looking over your shoulder. Your son depends on your strength to fight another day and he believes that you will win.

It's not easy and people have the misconception that CPers are weak and we just don't handle pain like others and they couldn't be more wrong!! Weaks not a word or trait any of us know and the average person wouldn't last a day in most of our lives and until I figured out I could win,was winning and had won for close to 20 years. Somehow the years rolled away,one day after another,my kids grew up,I grew older and those 20 years can't be viewed as losses.

I came here where pains forever banned and drew strength from others,gave rants,stomped my feet,and sometimes just screamed about the sheer unfairness of it all and then went back to my world stronger,madder and more determined to add another win to my scorecard!

You have been the Rocck here for many others and we have been to all your games and watched all your wins so your score and ours vastly differ,you have won time and time again,one day after another,one sometimes small step but always moving forward and you will win again after this bad inning.

We all have little left after our own bad innings and battles but we always find strength to send healing thoughts and many prayers to others and this is your day for those!
Posted 7/7/2015 4:19 PM (GMT 0)
You ARE the Victor! You ARE still here! The days go by so slowly, but the years fly by!

My daughter is undergoing testing protocol for Cushing's disease. At this point, they are trying to determine if it's Cushing's or Psuedo Cushing's. Such a rare diagnosis either way, and yes, she will be treated through a teaching hospital too.

Some days I can't imagine going through one more minute of pain, much less another day! Music is a huge help. This site is another. I'm having a 'not so bad day' today, so please, take some of my strength if you need it! Some days, you carry me!
Posted 7/7/2015 4:28 PM (GMT 0)
Becky-

I'm so sorry you are going through all of these things.

Every time I read one of your posts, I'm inspired by your strength, your love for your son. To me, you are a hero with your spirit.

I will keep you in my prayers!

Michele
Posted 7/8/2015 3:20 AM (GMT 0)
I think of you so often. You have been through so much. I Admire You ! I Admire The Way You Care For And Love Your Son !
Posted 7/8/2015 3:30 AM (GMT 0)
I don't know why I haven't used my name. Maybe with the screen name, it's still just one more protective wall. At this point, everything is just falling down :(

Spent today on the phone with a few of my Drs, my insurance, and my speciality pharmacy. Starting a daily injection which will be used off-label. I've always had problems with the injectable meds. My body always forms huge welts around the injection site. They can grow up to the size of a golf ball. Even with steroids and benedryl, ice, cortisone cream, I still get the welts. Now I have the added fun of taking a blood thinner :) Can't wait to see the lovely colors I'll be sporting each day. But the positive-with the injections, there will be no question as to how much med is in my system.

Thank you, again, for your encouragement. I think you guys believe in me more than I believe in myself, but I really do appreciate it.
Posted 7/8/2015 3:58 AM (GMT 0)
We appreciate YOU too!
Posted 7/9/2015 6:17 PM (GMT 0)
Stay strong, you are strong. There is hope, they have new things being invented everyday. they will find something to help.
But, I also know I never expected to be in pain for almost 20 years now, come December 2017 I'll have had my Chronic pain for 20 yrs (car accident in December 1997) at some point you do accept it, but then even I have days like you do now, no one that's not been through it can truly know or know just how much things change in your life. But, you can stay strong, you have so much courage, don't let this moment make your life, your life is yours still...
Take heart in knowing there is hope each and everyday...keep hope...Hey did you know there is another fantastic 4 movie coming out soon...are you going to see AntMan?
Posted 7/10/2015 1:51 AM (GMT 0)
Nate wants to see AntMan, so that is definitely on the agenda. At least once a month, he and I have an evening just for the 2 of us. He's getting older, and in-between sports and school friends, the kid is pretty busy. We both like doing our own thing, so I'm sure the ant is in our near future :)

I've been dragging, and yesterday's blood work showed low iron, but luckily not low enough for a ticket to the big house. Had an iron infusion today, so hopefully that will give me some pep.

I try to have hope, and usually I'm optimistic. I've been called Polyanna(from a Disney movie), and I'm often recruited to talk to patients, and even talked to my jaw surgeon's class that he teaches at MCV(Medical College of VA). But, I think like many of us, I try to shove my fear, doubt, and frustration, down as deep as possible. I think I've been shoving so much of this stuff down, I've finally reached the point where I'm overflowing.

I've had chronic pain for so long, it really has been interwoven into all aspects of my life. I remember in elementary school being last in line when the teacher blew the whistle at the end of recess. My friends could fling themselves off the top of the monkey bars, and run across the blacktop. That was just not possible for me, but I assumed everyone had pain throughout the day. I am not pain, but pain is a part of me.

I've had a lot of tough Dr's appointments lately. Decisions to be made, where there really isn't good choice.

It's just not fair.
Posted 7/10/2015 2:49 AM (GMT 0)
No, its not fair, never is and never will be, vent here, cry and get those buried feelings out, then take, heart, courage and hope that you again beat it for another day...
Enjoy the movie it looks good from the promo's...
Sending you prayers and hope...
Posted 7/13/2015 2:39 PM (GMT 0)
Wow. Sorry to see your story. This is why I came here, to be around people who understand. Most people don't have empathy. My wife has taught me a great deal about empathy and it is the main reason people without so many health problems can't be supportive. Everyone just wants to help, but empathy is just saying I understand that you are having difficulty and I'm sorry to hear it.

Stay strong. We all go through rough patches. We all have breakdowns where we don't think we can go on. There will be better days. Just hang in there and keep fighting.
Posted 7/13/2015 3:01 PM (GMT 0)
Thanks Chartreux and Countrydad :)

You guys know that my main crew of Drs is down at Duke(3hrs south), so we do a lot of email and texting. My main Dr(Dr K), told me not to downplay, and to describe exactly what's going on. Here's what I wrote:
When I refer to the "wrap" it's an area in my esophagus. I was refluxing and aspirating in my sleep which was resulting in pneumonia with multiple admissions. A Nissen Fundolopication was done which is when your stomach is raised and part of it is wrapped around the lower section of the esophagus. This results in an "enter only" stomach. I can't burp, get sick, or even hiccup.
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I'm really struggling. I'm getting pain and spasms around the wrap throughout the day and night. I'm pretty much immobilized when it happens-movement makes it worse. If I do fall asleep, I wake up with an awful taste in my mouth(doesn't taste like reflux) and feel like I'm choking. Yesterday I saw Minions(great movie) with the kid, and had a CRAZY spasm. It feels like my whole chest is being twisted. I had just eaten a few pieces of popcorn, which became stuck in the wrap. Managed to get to the bathroom where I coughed it up, but there was also some blood. I know I'm dehydrated and I'm having cramps in my legs. All my telltale signs of a hospital stay. Right now, my saving grace is that Nate is at soccer camp, and I can hide in my bed. Since I'm not doing much, I don't have to eat/drink much. I still get the spasms, but not as severe as the ones I get walking around. I've had pericarditis, pleurisy, and PEs, but this pain is so much worse. Weight loss is close to 65 lbs.
*****************************************************************************************

So-that's the stomach issue. Still have the other stuff, but the gi situation is affecting me the most at this time. Solids get stuck in the wrap area-feels like I'm choking, but it's further down so I can still breathe. Liquids make it down, but then I have awful nausea-cold sweats/dizzy :(

Again-thanks to those who continue to read these posts. I have friends and family who are always willing to listen, but thankfully, few understand our world. And then there are the people that I see occasionally, but not close friends. They assume that my health is improving due to the Cushing's weight loss. It's kinda hard to explain the whole situation, so I just say thank you.

You guys know the reality.
Posted 7/13/2015 11:03 PM (GMT 0)
Hi Rockyd,

I too have ILD, have had a full Nissen Fun - duplication, ha! I also have CPP arthritis & lots of associated spinal fusions & CP.

I will speak to the Nissen as it seems to be most urgent for you. For me its been 18 months. I too experience horrifying and painful choking episodes. I have associated sweats, chills, hot flashes & fear of aspirating & suffocating. The key to managing it is diet, strict diet. Although I have learned I can & do belch and even puke. Gastro reckons I've stretched it out enough as needed to do so. Are you certain you can't puke?

Don't' eat too fast, don't eat too much, don't eat meat or bread, popcorn is out.
I know - lots of don'ts - sorry. Do remember to chew. Love to chew.

Learn what you can & can't eat. I start my day with a warm drink & take it easy from there. Are you concerned your weight loss is too much?

Hope this helps.

Cary
Posted 7/14/2015 12:01 AM (GMT 0)
Can't throw up at all. I also did poorly on my swallow study. Really, on paper, I shouldn't have had it done. My body reacts to every surgical site with crazy inflammation, and very slow healing. Finally, after living in the hospital with repeated bouts of pneumonia, the surgery was done. In regards to the pneumonia, the surgery was a success. In april, the area was dilated, but it is still too tight. That's why I have ulcers all around the area. Dr can't dilate it again because I bled to much the first time. The general consensus is that it needs to be undone, but I'm not healthy enough for the surgery. Basically, a point will be reached where the inflammation has reached a point where it HAS to be undone, or I somehow get healthy enough for it to be undone.

Unfortunately, my diet is already a mess due to the jaw replacement. Chewing is no longer one of my talents. I also have absorption issues-which screw it all up. Feeding tubes are no longer an option because my body rejects them, so TPN has been my fallback in the past. I asked to stop in Jan to see if I could limp along without it. GI wants me in by Friday, so I'm assuming it won't be a fun visit. Weight loss is not good. I need iron infusions every few weeks, and electrolytes are a mess. I have a feeling that IV nutrition will be recommended so I can build up my immune system for surgery. And-to make it all the more annoying, it'll have to be done down at Duke. UGH!

I do appreciate your advice. Since yours is so stretched out, is it still effective? It's like we are on two different ends of the spectrum :)
Posted 7/14/2015 2:39 PM (GMT 0)
WOWEE Rock,

You can't catch a break! Do you feel like you're an expert at finding brick walls? Wish I had more ideas for you, stay with the liquids & ramp up slowly with other various mush?? How thrilling!

My wrap is intact. It functions quite well as intended. It will release for a small amount of puke if needed. Pre-wrap I could bounce food right back up, undigested. At least now its somewhat slimy & foamy - trying for a laugh here - sorry if it's not working. smilewinkgrin Do you like oatmeal & fruit? I do & it works as a good meal for me. I even put some chocolate on it for dessert.

Its difficult for me to maintain a healthy weight. I can only eat weeny portions slowly. I am convinced I'm hungry again before a meal's over. I sure wish there were a way to make your wrap settle down. Mine doesn't feel "natural" if that makes sense, as if my body is having trouble accepting it. Does it offer you any benefit? Hope you're feeling better today.

Cary
Posted 7/15/2015 3:02 AM (GMT 0)
I think my problem is that I'm 38 and I've been dealing with this about 32yrs. That's why I have the complications and the disease progression that I do.

The wrap has helped with the aspiration pneumonia. A couple of years ago I was on a high dose of Cytoxan(chemo) and inpatient frequently for opportunistic infections. Pseudomonas pneumonia was hard to kick, especially with the continued aspiration. So-yes, it has helped in that regard.

Basically, it seems like I'm just trading one evil for another. I just wish I could look into the future and know what should be done. What choice will give me the best QOL for the longest amount of time? It's also stressful because I know I'm not a good surgical candidate, so the doc posse must really feel it's necessary. I would like the knees and rt shoulder replaced, but not important enough :(

Anyway, the weight is an huge issue. The chunky Cushing's cushion has been a bit of a safety net, but it's the nutrition that I'm missing that's the issue. I was able to get one Ensure in today, and that was hard. You know when you swallow and it goes down the wrong throat? That's what kept happening, and I'd cough it up. It just won't get past the wrap.

The wrap is crazy tight, and like you said, it doesn't feel natural. It's so hard to explain to people what it feels like when it spasms. They wake me up multiple times and occur for no reason, and can take hours to settle. The inability to throw-up and the build up of pressure had me looking pregnant. Drs put in a Gtube, but my body refused to heal around it. I ended up with a fistula which added a fun trick. Whatever I drank would come right back out. The ER dr brought in blue gatorade for me to drink, and a few minutes later, out in came from the fistula. I should have charged admission for the crew he rounded up to come and play:) Obviously, this ruled out any sort of oral nutrition, so we tried a NJ. This called bleeding from the ulcers around the wrap, so out it came. That's how I ended up on the TPN. Unfortunately, that resulted in admissions for sepsis. Well-that ended up like a chapter out of my GI novel :)

Got a bunch of emails today and Duke wants my last 6 months of local GI records, preferably by Fri. UM…good luck with that one. Whens the last time anybody was able to get 6 months of inpatient/outpatient tests, appointments, and hospital discharge summaries-and from 3 different hospitals? Thankfully, I don't have to gather them. The plan is to repeat as few tests as possible, and to schedule as many appointments as possible on one day, or two consecutive days. I appreciate that, since GI tests are not the most fun.

How are you GI issues as a whole? You also mentioned ILD, how is that affecting you? Right now I have O2 for use at night, and other times when needed. Unfortunately, until the systemic issues can be reined in, damage continues to occur. ILD and pericarditis are 2 of the main reasons for the longterm steroids.

sorry for the long response. It's so good(obviously not that it's happening to you), to find people in kinda the same boat. I just feel like I've somehow lost my oars...
Posted 7/15/2015 2:51 PM (GMT 0)
My wrap feels like a cuff that inflates around my esophagus more or less depending on its own whim. Mornings are better for my wrap. I can get more down before it fully wakes up. I eat apple sauce, yogurt, oatmeal & smoothies for breakfast, sometimes hard toast with no butter. I add protein powder. I force myself to eat within a half hour of getting up. If I'm lucky I get some nutrition in before she starts acting up. My wrap is a bit like an unruly child that is overly attention seeking. I call her Olga.

Olga likes pasta & things that are slippery in small doses like ice cream.

I start the day with a warm drink & take my meds. Then eat, if I can.

I use O2 at night too. I am constantly rotating on & off steroids, aren't they wonderful? My blood hates me too. It hoards iron so that is a consideration in diet too. Vitamin C also hoards iron, I must avoid it.
I am having a plethora of tests done again in Oct. I'll learn how my LD is progressing.

If you feel like you've lost your oars its because you have. Let them go & wait for new ones to appear, they will. I am not a person of faith but encourage you to believe in your own knowledge & experience. You will get through this as you have for 35 years. You are very fortunate in that you have a son dependent on you. You must hang in there for him. I do not have that purpose but I know there is more to life than a pity party. I even have good days!

Hope this helps.

Cary
Posted 7/23/2015 3:10 AM (GMT 0)
Well, I tried and tried, but I'm in the "Big House" yet again.

I just haven't been able to get enough to eat/drink, and pain levels have been rising.

I've been coughing up small amounts of blood, when trying to dislodge trapped food. Also have had super low blood pressure these last few days.

GI, Surgery, and Internal Med, have been rotating in and out. The one thing you never get in a hospital is sleep.

The plan for tomorrow is to do an EGD and try to get an idea as to what is going on. Ulcers were seen around the surgical wrap in April, so the thought is that the trapped food is irritating them. Then the real question will be what to do in regards to the Nissen. A big plus is that the surgeon has performed multiple surgeries for me, and knows my funky problems :)

Pain is pretty well controlled, but I don't see much sleep in my future tonight.

It's obvious that I'm struggling systemically. I've somehow managed to develop cellulitis around my eye, and I have bruises head to toe.

I always have to throw something unexpected at the poor med students.
Posted 7/23/2015 11:17 AM (GMT 0)
Sorry you are stuck in that place. You certainly don't get much sleep in a hospital. Funny you are supposed to be there to rest and they never let you. I hope you get better and are able to go home soon!
Posted 7/27/2015 8:20 AM (GMT 0)
Still inpatient. Currently on TPN until nutritional status improves. Hoping a plan can be put into place tomorrow.
Posted 7/28/2015 1:45 AM (GMT 0)
Starting to get frustrated. I just need to see an end to this medical mess.
It'll be a week tomorrow, and no signs of discharge in sight.

It seems like each day brings a new idea or test.

Still being kept comfortable, but I want to tie my sheets and head out the window. It's only 5 floors up.

Hanging problems with IVs.

I have a port, but that is dedicated to TPN. Other meds are given thru a peripheral IV. Well, I've blown 5 the last 3 days. A decade of steroids and blood thinners have destroyed the veins. The nurses pushed for a picc, but the Infectious Disease doc would really really rather not. I have history of fungal and bacterial sepsis, and the Dr feels it isn't worth the risk.

I understand, but my poor blown veins do not :(

Tomorrow is another day.
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