View Full Version : Awful, awful, awful...need a hug or something
09-29-2006, 08:32 AM
:cry: Bad, bad, bad today. I don't know if I picked up a stomach flu or what, but I cant keep anything down. I keep sipping water, and throwing it up again. Same thing with soda, and I even tried ginger tea. Called my doctor, he ordered some suppositories for me (phentanyl or something like it) but it's not working, only making me sleepy. This is bad, folks. I'm in flare, and if I can't keep anything down, I can't take my meds....
Hubby says if I'm not better by the time he gets off work, he's taking me to the hospital. I am sure that Marvin, Cynthia and BennieSue (the nurses) will be glad to see me but I DON'T WANT TO GO!
NOOOOOOOOO not again!!! :cry:
09-29-2006, 09:02 AM
I go thru this ever month with the chemo - phenergan and compazine don't work for me - zofran is the only thing that helps
While you're acutely sick like this, water will just make you throw up more. Try just some plain saltine crackers - no water. Regular cola, not diet, slightly flat so it's not fizzy, will sometimes help nausea. Many ginger ales just contain flavoring, not enough ginger to actually help, and the strong carbonation may make you feel worse. If you're really thirsty, try just holding some ice chips in your mouth. Putting a cold compress against the back of my neck or the inside of my wrists sometimes helps me. If you don't start feeling better soon, you may need to go to the hospital at least till the vomiting is under control.
09-29-2006, 09:18 AM
I get that fairly regularly, too... Though they blame my ulcer... But, maybe not??
09-29-2006, 09:35 AM
ate two saltines and am sucking the ice chips...I can tell I am already dehydrated.
I will keep y'all posted. If I do have to go to the hospital I will have my laptop...
thank you so much my wonderful new friends.
09-29-2006, 10:41 AM
Things like clear soup, jello, popsicles, plain rice and yogurt have a high fluid content so they can help keep you hydrated without upsetting your stomach more. I try to avoid gatorade and sports drinks because it's easy for lupus patients to get their electrolytle balances screwed up. Eating a tiny something like a cracker or pretzel every hour or so keeps your blood suger level and may keep you from getting the dry heaves. The smell of food ccooking can often trigger vomiting when you're sick, so it's generally better to have someone else be in the kitchen, or fix things you don't have to cook. Even when you start feeling better, you might want to stick to a light diet for a while.
If you can find the acupressure point on your inside wrist, pressing firmly on it may control nausea
09-29-2006, 05:42 PM
I'm so sorry that you're having such a terrible time today - I do hope that if you're not able to keep anything down, that you do call the doctor. I suffer the same - yogurt and jello seems to be the only two things I can keep down....and I eat them so slowly.
You'll be in my thoughts and prayers. Let us know how you're doing.
Hope you're feelin' better tomorrow.
09-30-2006, 11:13 AM
This will be long. I'm in the hospital with my laptop, and I'm bored, upset and sick...
Yesterday afternoon my hubby took me into the ER. I was just too dehydrated and the vomiting/diarrhea would not stop. They have dx'd me with gastroenteritis. They tried IV's in practically every place they could, but my veins are SO bad (they tend to flatten out)...finally were able to get one into my foot (ouch, ouch, ouch)
So (this is not for the queesy here) I had to use a bedpan. Last night there was a non-staff nurse on duty (I think she was from an agency or something) I had used the bedpan for the IBS and it was awful. I rang and rang and rang...20 minutes I sat there. By that time my bum was burning so I started trying to use babywipes to get it off my skin.
She finally came in and started bawling me out for throwing the babywipes into the bedpan (hey what else could I do, I can't walk to put them in the trash with an IV in my foot!)
Then she had to give me solumedrol (something for the flare) and it has to be pushed slowly through the IV because it burns like coal oil. She looked me dead in the eyes and pushed the whole dosage through and said, "Don't be a baby. You should be used to this." THAT B*tch!
I was so furious! When the patient care tech came in, I told her what happened, and she sent in Marjie, the head nurse on the shift. Marjie sent that other nurse home and called in Marvin, who was grinning ear to ear. He is so funny, I call him Starvin Marvin cause he is tall and skinny. He said, "Well, it was my night off, but Marjie told me Kathy Lopez done fired the agency nurse and hired YOU!" What a sweetie.
I have an NG tube and am allowed clear liquids (ugh the dreaded green jello.) They are giving me compazine for the nausea, which is helping, and keeping me hydrated, in addition to treating my flare. (What the heck is solumedrol anyway???) Is gastroenteritis a common thing with Lupus, because I've had it several times before.
It's so boring in here, but at least I have all of YOU. Thank you for letting me vent. This way I can be sweet when my hubby comes to see me this afternoon. Love to all--
09-30-2006, 12:09 PM
Gastroenteritis is a general term for a GI disturbance with diarrhea, nausea and vomiting - it can be viral (i.e. stomach flu), bacterial, and so one - there is no one specific cause. Treatment for viral gastroenteritis generally involves controlling the symptoms and preventing dehydration and possible complications. Of couse everything is more complicated with lupus since any illness can trigger a flare. Solumedrol is Methylprednisolone, a very strong steroid which helps reduce inflammation in your GI tract, and will hopefully prevent you from having a flare. I can't believe they used a foot vein - I hate those. My veins are so god-awful from chemo that I always have to have a central line, generally in my neck. I used to have a port-a-cath which had to be removed because of infection, so I can't have another implanted yet.
You were right to complain about the nurse's actions - the nursing supervisor and the nursing agency both need to know about this behavior so this woman will not be hired out. Can you imagine what that type of person might do to a frail or helpless patient who couldn't complain?
I'm glad you are able to have your laptop- my rheumy and internist won't even let me keep my blackberry when I'm in the hospital. My last extended hospitalization was over four months long -a month of which was in a "clean room" where I couldn't even have books or magazines - and I thought I would go crazy from boredom.
I hope by catching this early your doctors will be able to get it under control and you can go home in a couple of days. I KNOW you will miss the green jello - maybe your hubby can make you some at home. I don't understand the food choices at many hospitals - I had to be on a clear liquid diet for several days after a bout of pancreatitis - when they finally took me off the clear liquids, instead of gradually bringing back solid foods, the first meal they brought me was cabbage rolls with tomato sauce, and fried okra - their idea of a vegetarian meal! UGH -instant nausea again. I had to beg for tea and toast. To this day the smell of cabbage makes me sick.
Keep us posted on how you are doing!
10-01-2006, 12:26 PM
and now for the NEXT chapter in my saga...
The vein in my foot was not working well, so they brought a doctor in to give me a central line. He messed up and punctured MY LUNG! It's 50% collapsed, so they put a tube into my back to "suction" and reinflate the lung.
so now I have an NG tube, a central line, and a tube in my back...oddly enough, it's the tube in my back that hurts the worst.
They're also giving me trazodone to help me sleep at night because the solumedrol is really interfering with my sleep...it's like a super steroid!
Still on clear liquid diet, sigh...but the vomiting has stopped. I *may* get to have some solids tomorrow, the GI doctor told me.
I thought inserting a Central Line was something any first year resident could do without screwing it up. My husband was FURIOUS!!! The same dr. wanted to put the back tube in, and my hubby stormed, "You're not TOUCHING my wife again! I want the cheif of surgery in here!"
they didn't bring the chief of surgery but some other hotshot doctor. I could tell he was mad (not at us but at the first doctor who messed up)
My poor husband...what a day he had yesterday. First, he had a flat tire he had to change. Then the battery was dead, so he had to buy a battery. Then when he gets to the hospital, all this drama.
Here's a great tip for when you're in the hospital...Hubby brings food for the nurses station...he brought pizza the first night, subway sandwiches the next. Of course, the nurses know us from all the times I have been here. He also put snack size candybars in my room not for Me but for the nurses...they pop in to get a snack and therefore check on me all the time! Thank God for the nurses...I love 'em.
10-01-2006, 01:16 PM
you are having an awful time of it. I wish I could tell you that what happened to you was a freak occurrence, unfortunately it's one of the more common complications of central lines. At least the problem was caught and treated early - hopefully the chest tube will resolve the collapsed lung with no further complications.
i don't know about your insurance coverage, but you should definitely talk to the hospital's risk management department to insure you are not billed for the additional medical treatment expenses incurred as a result of this doctor's negligence. These bills should be written off by the hospital. The hospital's ombudsman or patient care advocate should be able to tell you who to contact. You also need to insist on getting a copy of any internal report or investigation generated by the hospital - the hospital may kick about this, but insist.
10-01-2006, 02:25 PM
Will definitely talk to the hospital about these issues. The LAST thing we need right now are additional medical bills....esp. since this was their mistake.
Have to take resp. therapy now because they said I'm a prime candidate for pneumonia (I guess because of the lung!)
I watched football with my husband this afternoon...we are both FIENDS about our team, and they won, but we made so much noise, they asked us to shut our door, :lol:
Love to all--
10-02-2006, 07:08 AM
My lung is reinflating, but slowly. Hubby wanted to spend the day with me, but he is a principal at a high school, and when the cat's away, the mice DO play...so I sent him on to work, bless his dear heart. (He snuck me in some toast, which I dunked into my morning broth...tasted sooo good...sneaky, I know, but I hope it doesn't hurt me...)
The GI doctor says I get a salad for lunch! *doing the happy-happy-joy-joy* dance. If no problems, she says they may remove the NG tube tomorrow. (I hardly notice it now.)
Man, the solumedrol gives me wierd dreams! I dreamed last night that I was driving down the highway with the sunroof open (something I never do) and a deflated basketball fell into my car! Then Yao Ming (a famous Houston basketball player) waved me to a stop, opened my car door, smiled and said, "Thank you, I lost this." and took the basketball. Strange.
My husband bought me a sleep mask, which really helps in the hospital.
Have a great day, everybody. Bennie Sue, my FAVORITE nurse, is taking care of me all day today. She's cheerful and funny and ever so gentle.
10-02-2006, 01:05 PM
Oh sweetie. I am so sorry that you are having such a rough time, but I am glad that it sounds like somebody is finally taking pretty good care of you. It is very smart for your husband to take good care of the nursing staff. It might sound like "cheating" but I say whatever works to get you the most attention possible is the best thing to do!
I'll keep you in my prayers and you concentrate on getting better!
10-02-2006, 01:39 PM
Well, I got the ng tube removed, and they brought me my salad...
Ohhh it looked so scrumptious. Romaine lettuce, ripe tomatoes, shavings of some kind of white cheese, and strips of grilled chicken...
Just as I was about to take a bite, the GI doctor walked in and pointed to the salad....she said, "Take off the chicken, the cheese and the tomatoes."
I nearly cried :mad: But I ate the lettuce anyhow. these steroids make me HUNGRY!!!!
Something really nice; there are two young CUTE guys (hey I'm gonna be 50, but I still notice) who pick up the trays...when one noticed all the stuff I picked off the salad, he asked why and I told him. The kitchen manager came down and asked me what I REALLY wanted to eat. Well, when I was sick as a kid, my mom always made me tomato soup with grilled cheese. The kitchen manager talked to my GI and ask what I could and couldn't have at this point. The tomato soup and grilled cheese has been approved for my dinner! *happy-happy-joy-joy* dance :D
10-05-2006, 12:16 PM
5th day in hospital...
The ng tube is gone (YAYYY) and I am allowed soft/bland foods...soups and sandwiches mostly. The lung is still not fully reinflated, so still have the suction tube in my back and the Central Line. They say maybe they can take it out tomorrow; I hope so.
they x-rayed my pelvic region because of the pain I've been having in my hips..I thought it was just inflammation because of this flare I've been in. It turns out I've got some hairline cracks and bone loss there. I've been taking calcium supplements ever since I started taking Prednisone, but they have me on Fosamex now as they say it's much better protocol for steroid takers. So even after the GI thing is gone, they will want me to stay until the fractures mend. (how long they won't say.)
I'm trying to keep a good face on all this. If not for the GI tract problems, they wouldn't have found this hips thing, and it would have gotten much worse. I feel so stupid. It felt like ground glass in my hip joints, but I am so used to aches/pains during my flares, I didn't realize it could be THIS! The doctor looked at me like I was nuts. He said, "What are you trying to be, Saint Kathy of the Uncomplaining?" Ah well.
At least I can EAT now (for a foodie like me, not eating was like some cruel and unusual punishment!)
Oh, they are giving me meds for the pain now...wooohooooooo. As if brain fog wasn't making me silly enough! It still hurts, but I don't care because of the meds!
I miss my hubby (though he stops by in the early a.m. and spends 4-5 hours at night) and I miss my doggies! Sounds silly, but I say goodnight to them on the phone after he gets home.
I want to do something special for the nurses here when I leave. They have been so terrific. It can't be too expensive...offer up some ideas, please. They are becoming like family to me.
10-05-2006, 12:36 PM
You know, even handwritten notes can mean the world to someone. Imagine the hundreds and hundreds of times they take care of people and never hear from them again. I don't think you have to give a gift, just the gift of your kind words and a heartfelt thought to the individuals who paid special attention to you is worth a lot more than money can buy.
That may sound kind of simple and silly, but that is what I think....
10-05-2006, 01:03 PM
My first clue that I had severe osteoporosis was a major compression fracture of the spine - even though I'd been taking steroids for several years (even before lupus I was taking them for asthma) doctors never mentioned osteoporosis meds, and I never asked because of my age - I thought osteoporosis was an old woman's disease. As it turns out I can't take Fosamax, Actonel and similar meds because of esophageal problems related to lupus/scleroderma, so it's an on-going problem for me. I take parathroid hormone IV but it doesn't restore the lost bone, just keeps the problem from getting worse. The x-ray technician at our local hospital was appalled when I had a bone scan because the scan lit up like a christmas tree from all the fractures I've had.
I do not understand why every doctor who prescribes chronic steroids doesn't automatically order a bone density test for all patients, male and female, regardless of age! It would prevent so many prolems later!
Are you wanting to do something for the nurses before you leave the hospital, or afterward? I usually bake muffins or brownies and take to the nurses after I get out, with a pretty thank you card. I also like to get some really nice hand lotion in a pretty pump dispenser for the nurses' station - they wash their hands so often the skin gets raw, so lotion is really appreciated. I love the Camille Beckman glycerine hand therapy, which comes in several wonderful scents. Sometimes places like bath and body works have mini or sample size individual lotions you can get nexpensively. If you don't have a lot of nurses you want to get gifts for, individual Halloween treat bags with some little goodies would be cute and different. If the nurses' station is really dreary, a potted mum or bright plant might be nice.
I am so glad your tummy is behaving better so you can finally have some solid food!
10-06-2006, 06:47 AM
I will write the thank you notes...also might buy a nice plant for the nurse's desk for them to enjoy. To whom in the hospital should i write a note detailing how much I love these people?
Still on bland diet, but may get to graduate to regular food soon. I begged hubby for a calzone last nigt, but he says not to push it.
I think I told this to Beautiful Beluga, but when I call at night to say goodnight to my doggies, they all respond in different ways...
Novio, our big boy, rolls around on my side of the bed, crying and howling, like "I miss you mommy! Please come back!
Marisol, our mommy dog, licks the reciever: "Sluuurp, sluurp sluurp"
Buster, our busy little Boston Terrier barks at the phone demanding"
Where are you? When are you coming home? Come home NOW!
Sure wish they'd let the dogs visit!
10-11-2006, 09:27 AM
I feel like Roseanne Roseannadanna---"It's always something."
Now I have the beginnings of pneumonia, probably due to the collapse of the lung and the inactivity of this hospital stay. They have been taking daily x-rays of my lungs since the puncture incident, and the lung was re-inflating so very slowly (more slowly than usual, I guess.) So they had me doing respiratory therapy and breathing excercises, but last night I started to cough and cough, but nothing would come up...it hurt, too, but when everything else hurts, you just don't notice. I figured it was sore muscles from coughing. I didn't think of pleurisy.
My x-ray this morning looked like bunches of grapes with seeds in them. The sputum that I could bring up this morning was not clear but murky and icky-colored. So now it's pneumonia too. More drugs, antibiotics, sigh.....
I don't know whether to cry today or scream into my pillow or throw things...actually I have done all three this morning. I am wondering if I will EVER get out of here.
First a lupus flare, then gastroenteritis, then the lung, then hip fractures, and NOW THIS?????? I haven't even called my husband at work and told him yet...He has a high school to run, and why wreck his day? This news can wait til tonight. I dread telling him.
I miss my house. I miss my own bed, with snoring hubby next to me. I miss my own food. I miss my dogs. I miss being able to sleep in any poisition I want without worrying about this tube or that needle...
This is just a poor poor pitiful me rant, I know. Sorry. Feel free to give me a good shaking if you feel like it.
10-11-2006, 10:11 AM
I think you need a hug worse, so consider yourself HUGGED!!!! But at least the docs caught the pheumonia in its earliest stages, so they should be able to treat it quickly with antibiotics and breathing treatments. I know it must hurt when you cough, ask the nurse for a little pillow like they use for heart surgery patients - I think it's called a heart hugger, and press it against your chest when you cough - it helps! And chicken soup really does help loosen chest congestion, so have a big bowl of it! Hang in there - you will get through this!
10-11-2006, 12:30 PM
I've gotta' tell you, reading this progression of msgs is scary to a relative 'newbie' like me. I don't know what to expect from this disease (none of us do, right?) and hearing about your experience is sobering and frightening. I think I've learned a thing or two as well. My heart goes out to you! Know that I'll keep you in my prayers.
10-12-2006, 09:13 AM
The little pillow DOES help...I am coughing more easily and bringing up lots of the bad stuff. I assume the antibiotics they've given me are helping too.
Drinking lots of water, and lots of soup, too. The more fluids, they tell me, the better, because it flushes the toxins out and thins the mucus so you can get it out of your lungs.
I did talk to the patient care advocate here and not to worry, I won't be charged for anything that happened as a result of the punctured lung, including the extra days needed because of this infection.
My mom said, "Well, whenever you're in a hospital, you're surrounded by lots and lots of other people's germs. The less time you're in a hospital, the healthier you'll stay." Ain't THAT the truth?
Hubby didn't take the news well. He misses me at home too, and this hospital stay is a stress he doesn't need. Bless his heart, he's such a dear.
10-12-2006, 11:04 AM
Yes, they gave me one when I had a bad bout of bronchitis and was coughing so hard I actually broke two ribs - the joys of osteoporosis! It hurt so much that I was coughing and crying at the same time - I think that little pillow was a lifesaver. I kept mine and brought it home from the hospital, and still use it when I have a bout of pleurisy or bronchitis.
I'm glad you are feeling better and finally able to eat. I have a big cast-iron pot of black bean chipotle chili simmering on the stove, and some blue corn muffins with pinon nuts ready to bake - wish you could come from supper! If roasted chilis don't clear up your congestion, nothing will!
10-12-2006, 04:03 PM
Well, okay, we have hit another bump in the road here haven't we? Well, you just remember to take care of yourself and try to think happy thoughts (and maybe tinkerbell will come and you can fly off to never land! :P)
Anyway, I am thinking about you and praying for you and your health. I will be sending lots of of hugs and California sunshine your way (with the UV rays removed, of course!)
10-16-2006, 09:50 AM
Y'all are great--wow, wish I could do a Samantha Stephens and twitch my nose to your place to eat your dinner--sounds luscious!!!
Still coughing up stuff, and sore as H*LL but the X-Rays are looking better.(they removed the chest tube in my back as the lung is now reinflated, thank GOD!) I still have the central line, for all the meds and the fluids they say I need more of to thin this mucus.
cough, cough, cough....walk, walk, walk...on the sore hips, but taking pain meds so I don't mind. The more active I am, the faster this pneumonia will go away and I can go HOME!!!
I can eat anything I want now...yeaaaaaah! Hubby brought in catfish tacos (it's a tex-mex thing...tastes WAY better than in sounds) I ate myself silly!
Love to all--
10-16-2006, 12:10 PM
If your stomach can tolerate that, you must be feeling better! Any idea when they are going to spring you?
10-16-2006, 01:08 PM
Good news!! Good News!! My X-Rays this afternoon looked so good, they say they will look at the ones tomorrow and I MAY GO HOME if not tomorrow then the next day!!!!!!
I am so happy I am crying.
Thanks to all of you for being here for me. I did not have many visitors (mostly a very few close friends and my husband) but while in here, I felt like I got tons of wonderful visits from all of you every day. Y'all are the absolute BOMB!!
Going to do some walking now and drink some more water and cough, cough, cough.....the more stuff gone, the better.
LOVE TO YOU ALL!
10-16-2006, 01:19 PM
I KNOW YOU ARE HAPPY! Just don't overdo with the walking, you don't want to slip and fall! Keep up the hot soup and the water and COUGH, COUGH, COUGH!!!
10-17-2006, 10:11 AM
Yippeeee - Littlred is coming home soon. Please take Marycain's advice..take it slowly and keep coughing!!
I am so very happy for you :lol:
10-17-2006, 01:46 PM
Going home, going home going home tomorrow!!! YIPPEEEEEEEEE!!!
Lungs are looking good. Will stay on the solumedrol for awhile, along with plaquenil and some kind of mucus thinner, and antibiotics...more pills, but who cares????????
As for my hair...
I love Judy Collins. She has a song called, "Who Knows Where The Time Goes?" That I absolutely love! So, with apologies to Judy...
"And now, my lonely scalp,
Your fickle friends are leaving....
But, of course, they know
It's time for them to go....
So fall out, all you follicles,
I'll still be breathing....
Where my hair goes?
Who knows where my hair
10-18-2006, 06:48 AM
Yea....home must sound like the best thing in the world to you! Please DO take it easy. I hope that's the last you see of the hosptial for a long time. God bless.