I Think I'm Really Going To Do It This Time

[lduran]

Liz, I have been following your story, Fifa and Peggy's. I am due to have surgery for the first time in the next couple of months. Glad to see that you are coming along and recovering well. The part of the pain meds scare me as I try not to drink pills no matter how much paid I have.

[Lizardacres]

Hi Iduran and welcome to the forum. What specifically bothers you about the pain meds? I don't know what kind of surgery you are contemplating or if you have experience with any previous surgery, but I really don't think the surgery I had would be possible without them for at least a few weeks. I'm about 2 1/2 weeks post op now and am just able to start cutting back some of my doses from 2 to 1 pills at a time (Vicodin). I also still take an OxyContin at night.

I pretty much don't remember much at all from the week I was in the hospital, when I was on mostly IV dilaudid and Valium and according to my husband that is a good thing because I was pretty miserable. I think it was the dilaudid that bottomed out my bp and caused them to give me Narcan in the ICU, which immediately undoes the action of the narcotics which causes severe pain. But this has happened to me after other surgery when I had morphine so it is not specific to any particular narcotic. My bp is naturally low anyway.

I went home on Percocet and OxyContin, which give me hallucinations so I requested to be switched to Vicodin from Percocet even though I don't think it is quite as strong. Please speak with your surgeon at a preop appt re your concerns about meds. The problem is that there will be multiple docs at the hospital who write your orders for pain meds, so your wishes may not be communicated.

The first week home was rough as it was hard to find a comfortable position anywhere but this week is better. I definitely notice when the pain meds are wearing off, the places that are not numb still have sharp pain, like a knife wound. The pain meds are very helpful still.

Feel free to ask specific questions.

Liz

[Lizardacres]

Wanted to show off my pic from 17 days post op. Have no X-rays yet but we don't walk around with X-ray vision anyway. The tape finally fell off and this pic is post a long hot shower.

My scabs are not nearly as red now, more dark purple. Funny how the bottom is so much neater than the top. Don't know if it is because different people closed these sections or if the top just gets more wear and tear from using your arms to position yoursel, wash hair, etc. Would love to hear any comments from others re: how their incisions healed.

I can't believe my lumbar hump is essentially gone, and it was big. After the first anterior surgery, I would feel my back and it felt so flat, so the anterior surgery must have a lot to do with this. I am really pleased with the outcome so far. The pain along my lumbar curve is gone as is the pain in my sacrum and hips. The main pain I am having now is at the top of the incision, I guess because it is not numb and I am still having a lot of muscle spams in my back, which come and go and move around. But no nerve type pain.

I don't have pain sitting in hard chairs but riding in the car is awful and I really avoid it. I feel like I sit like Lady Mary now (Downton Abby).

My abdominal incision is much more healed than the back and not feeling nearly as lumpy as it did at first, so I guess their is hope for a decent scar. I do feel as though I am losing muscle mass in my legs, but what are you going to do at this point.

[golfnut]

Your back looks great! Even at 4 years postoperative, i still occasionally feel my my back where the rib hump was and am delighted it is gone. My, how I hated it and was so self conscious! Don't worry - you will regain your muscle mass. I think all of my muscles atrophied but eventually they got back to normal. I am glad you are doing so well.

[fifa]

I'm on the other side now and decided to come home instead of intensive inpt rehab. My husband has been my guardian angle and mother hen. I almost died in the hospital from narcotic OD. Had to have narcan twice which is so unimaginably unpleasant. He is keeping great records now. Too tired to write. Could NOT have done this wihtout hm

Oh, Liz - so happy to hear your surgeries are over. Even though I haven't been posting lately, I've been thinking of you and praying for you every day.

Also, to you and Jess, yes, I started back to work, but only part-time and am working from my bed. (sly smiley) My job is such that I don't really have to be there anymore to work - I'm a fiscal/accounting person now after my medical career, and fortunately have better bosses than at the hospital. They just want me well ASAP, so they are agreeing to whatever it takes. I didn't know until maybe a week or so before surgery that my doctor would not release me to go back to work for twelve weeks - I only had enough paid time saved up for two months. Once I started back part-time, I could use the vacation and sick I accrued during the two months off. It's too hard to explain, but yes, I'm working between 20-30 hours per week flat on my back here from home, and using 10-20 hours of vacation/sick to compensate.

Also, to you both, I filed a complaint with Patient and Family Relations at Barnes Hospital in St. Louis about my early discharge. I got copies of all of my records and all of my radiology films plus reports when we were up there a few weeks ago, and my standing plain films done the day of discharge (EDIT - the films were done on the 13th - two days before discharge) mentions the ileus. The collection calls are coming (I have until March before they turn them over to a collection agency), but I've told them that they will be paid one way or another by then. I've also told them they need to write off what I owe them (a whopping $575) - the same department at BJC collects for both Barnes and Boone Hospital here in Columbia (Barnes owns Boone). I told them the second hospitalization wouldn't have been necessary if someone had paid any attention to what I was trying to tell them and show them (hubby says it looked like I had swallowed a basketball). So, I got mean when the radiology report clearly mentions the ileus that I myself saw on the photocopies of the films I was discharged with.

Patient/Family Relations is blaming my doctor, which is very upsetting, so they must file the complaint against the attending physician, as he is "in charge" of my care. I told her she also needed to including the nursing staff and the care coordinator (typically an RN who is a social worker who sees to your discharge planning). My husband even spoke to the nurse on Thursday who said there was no way I should be going home on Saturday, plus he waited 1.5 hours to speak to the care coordinator about the same.

So, I got a five-day stay because that is what the insurance would pay for and no one noticed that I had an ileus or they would have extended my stay.

I've told both Barnes and Boone that if they don't write off the copays that I owe them, they will be hearing from my attorney (who actually drove me to Barnes and stayed with me for two days - she's my best friend) and I would be suing them for MUCH more than a couple of copays. The ambulance ride from St. Louis to Columbia was $2,200, which I would not have needed had they fixed the ileus before discharge. I could not sit up - I was that huge, and I could not wear the size 2X (bigger than I needed) sweatshirt I wore to the hospital.

Anyway, I digress. If you have Medicare, you can appeal your decision should they want to discharge you before you are ready. You must sign that form twice. DO NOT HESITATE TO MAKE A FUSS!! Ask for the head nurse, your doctor, the patient relations person, anyone. Don't leave quietly.

Hang in there. If I can help in any way, let me know. Sorry I haven't been around much lately. Work has worn me out. Everything wears me out. (smiley)

Praying for you!

Fifa

[fifa]

Can't wait to get copies of my films to scrutinize and post here. According to my husband, my curve improved from about 70* to about 30* lumbar. I ended up needing only two units of blood which made me very happy. I'm finding it hard to do anything but sit straight up or lie on my side to watch tv - would appreciate any other suggestions!

Good grief, Liz, I can't even sit up now, and I'm nearly three months out. I mean, I can't sit up for very long. LOL The majority of my problem, the really severe part, was my lumbar spine. I have two cages, one at L3-4 and the other at L4-5. I don't know how much height I've gained, but did gain some. My friends have noticed and I don't have to get all tippy-toed to kiss my 6'5" hubby anymore. Also, I needed a third "short" rod in my lumbar area which was dominoed (piggy-backed somehow) over to the long rod on the left. I'm fused from T11 to the sacrum with pelvic fixation.

To nearly OD twice is just unthinkable. What an awful experience!

I, too, would have been lost at home without my husband. He monitored every med, food, BM (which there weren't many!), and even set alarms and got up in the middle of the night to give me doses of things.

My best advice to you would be to very closely monitor your bowel movements, especially if you are taking the large amounts of narcotics it seems everyone gets when they go home. Don't wait more than a couple of days without going. After the ileus and having to be readmitted to fix that, I've now had four fecal impactions, which are very unpleasant. The fecal matter is too big to "pass" and has to be removed manually. Get yourself a stimulant laxative that is also a stool softener (I like Peri-Colace) plus I also use milk of magnesia every two days if things haven't "moved." I tried natural remedies first and was on a prescription stool softener, but I wasn't eating or drinking enough, so be sure to monitor all of those things. Anyone who has had an ileus or a fecal impaction/bowel obstruction will tell you it is horrible.

Also, some of those meds may take you to hell and back. I was an ass to my husband on numerous occasions, especially when it was med time. I also was a sobbing mess, again, when it was med time. I don't know what I would have done without him.

Sounds like you are doing great. Just rest and heal. Don't be surprised if you are at all ends of the emotional spectrum all at once, and don't be surprised if you are discouraged that you are not progressing fast enough (I sure have been). Just hang in there and realize it doesn't happen overnight. Just today, I raised myself up out of a chair without using my arms to "push" myself up. I couldn't believe it.

I'm glad to hear you are doing so well. So happy for you!!

Very gentle hugs,
Fifa

[fifa]

I love your thinking! All my life I've bought the loose shirts to hide my hump and uneven hips. Dresses never fit as I was too short waisted. You bet I'm planning to shop for some sexy new clothes. I'm surprisingly swollen around the middle right now. Not eating a lot but my skin is tight. Don't know if they fill you up with air during the alif but it's the least of my worries now.

Had the doc switch me off the Percocet yesterday to Vicodin as the hallucinations were driving me nuts. I am guessing the Vic is not as strong as I am really hurting this morning. I still also take OxyContin. It's hard to get the meds right.

My husband is super excited I have cut back on the stool softeners, I was so paranoid after Fifa's story about the 10# sack of potatoes that when I hadn't had a bm by discharge, I made it my mission to have one ASAP once home. A couple double doses of miralax, a ducolax suppossitory and a full bottle of mag citrate made him extremely glad I had stocked up on baby wipes. Oh, and I forgot the fleets enema. He had to put me on the shower chair, lol. I didn't mean to use everything but I kept adding stuff until things started to happen. I'm getting by well now with a double dose of miralax in am and two senna at night. He asked me to throw out the extra bottle of mag citrate, but I hid it just in case.

OMG - I laughed out loud at that but should not have because it certainly isn't funny when it happens. I think you were smart to stock up. Just keep a record and don't let yourself go (and I mean NOT GO) for more than a few days. I did the same thing, though - I used so much stuff to keep it from happening again that I was going every hour or so. That was miserable, but not going is so much worse... Also, when you're on oxycodone and all that stuff that you're on (narcotics/valium/muscle relaxers/whatever), it is hard to think clearly even when you THINK you are thinking clearly. I kept adding like that, too, but I was too high to try to track it myself. Let your husband manage your meds, and track your intake and output, too.

Good call on hiding the mag citrate. You never know and can always toss it later.

Your buddy in toileting,
Fifa (LOL)

Oh, shoot, and before I forget - I also have lost 30 pounds since I came home from the hospital (all those days of not eating....ugh). Anyway, you may lose weight, too, so don't be surprised if you are wearing different sizes. Just the change in height may be enough to lose a dress or pants size. Just window shop for now for a few months would be my advice....

[fifa]

Wanted to show off my pic from 17 days post op. Have no X-rays yet but we don't walk around with X-ray vision anyway. The tape finally fell off and this pic is post a long hot shower.

My scabs are not nearly as red now, more dark purple. Funny how the bottom is so much neater than the top. Don't know if it is because different people closed these sections or if the top just gets more wear and tear from using your arms to position yoursel, wash hair, etc. Would love to hear any comments from others re: how their incisions healed.

I can't believe my lumbar hump is essentially gone, and it was big. After the first anterior surgery, I would feel my back and it felt so flat, so the anterior surgery must have a lot to do with this. I am really pleased with the outcome so far. The pain along my lumbar curve is gone as is the pain in my sacrum and hips. The main pain I am having now is at the top of the incision, I guess because it is not numb and I am still having a lot of muscle spams in my back, which come and go and move around. But no nerve type pain.

I don't have pain sitting in hard chairs but riding in the car is awful and I really avoid it. I feel like I sit like Lady Mary now (Downton Abby).

My abdominal incision is much more healed than the back and not feeling nearly as lumpy as it did at first, so I guess their is hope for a decent scar. I do feel as though I am losing muscle mass in my legs, but what are you going to do at this point.

Oh, LOOK HOW STRAIGHT YOU ARE!!!!! (HUGE ALL CAPS SMILEY!!!)

You look fantastic. The top of my incision was weird, too, and the scab took forever to fall off. It was a very thick, sort of multi-layered scab. Don't know how to describe it, really, but it was over an inch long and really thick with layer of layer of skin. It was really weird. It was the last scab to go and bothered me no end (it was right under the bra strap - ugh). I didn't know it had finally come off - found it in the bed and couldn't imagine what it was.

I cannot believe how well you are doing, how straight you are standing, and how much you are posting! Nearly three months out, I don't feel like doing much. I don't want to ride in a car or sit really anywhere. I'm walking nearly every day, but my stamina isn't much and I'm exhausted afterward. I have to rest (lie down) after taking a shower. Getting dressed seems to take forever. Today is the first good day I've had in about a month. I had two good days in a row last month, and of course did too much and had to add some pain medicine back in that I had weaned off of.

You go, girl!

Fifa

[Lizardacres]

I can't believe you were able to wear a bra at all. The skin on my back is soooo sensitive. I actually threw out a nightgown yesterday because the little pleats on the back of the knit fabric drove me crazy all night. Plus it was an old one and the fabric is slightly pilled. I feel like the princess and the pea.

My only visitors are family and they watched me breast feed both kids and if the can't handle seeing me bra less they can stay home!

My hospital experience was not so great either, but not nearly as bad as yours. My suggestion to anybody contemplating surgery is to have a family member in your room as much as possible as you will get better care. Although my husband found that being their just meant the nurses used him to do as much of my care as possible, like fetch ice chips and turn me. The night shift was the worst. My bed was right outside of the nurses station and I could hear everything they said all night, but they ignored me when I requested ice chips or other help.

When I was finally able to eat, I was so weak and in so much pain, I asked the nurse if she would help feed me. She flat out refused and said they didn't do that. After OD'ing on pain meds I felt very under medicated the rest of my stay. I would scream when they tried to pull me up in bed and they would chastise me for being a baby. They told me that this surgery wasn't as bad as childbirth and I really beg to differ on that! Childbirth is maybe 20 minutes of pain and then everything is worth it. Maybe I had easier childbirth than most.

I am feeling hurt by my surgeon's office this past week by the PA that writes the refills for pain meds. Both times I have called for different drugs I have received a mini lecture about how much I am taking. I am probably about a week behind their weaning off schedule and think I am doing well as I am already cutting back on the dosage, to the point that I really notice more pain. I think I'm doing pretty well and really feel upset about the guilt trip.

I guess that in the end it is the result that matters most. Don't expect warm, fuzzies from a surgeon and you won't be disappointed.

[lduran]

Hi Iduran and welcome to the forum. What specifically bothers you about the pain meds? I don't know what kind of surgery you are contemplating or if you have experience with any previous surgery, but I really don't think the surgery I had would be possible without them for at least a few weeks. I'm about 2 1/2 weeks post op now and am just able to start cutting back some of my doses from 2 to 1 pills at a time (Vicodin). I also still take an OxyContin at night.

Thanks Liz for sharing your experience... The fact that the pain meds give you hallucinations, ODs etc scares me to no end... I am 39, dealing with scoliosis since my teenage years... Currently my curve is only 55 degrees; and I say "only" because I can see others with much worse curvature! I have two small fractures and 3 herniated discs due to the curve. I have been postponing the surgery for years now and it's finally time; the pain is pretty severe now and as I mentioned I try not to take too much meds. I'll be doing the surgery with Dr. Lebwohl at the UM facility in Miami, FL; probably around early April.

PS. I hate to highjack your thread, so thanks in advance for letting me.

Loretta

[Lizardacres]

Well, I knew Percocet was not my best friend when I took it after having my wisdom teeth out and specifically asked for something else post op, but ended up with both long and short acting varieties to take at home. I didn't realize OxyContin had the same ingredient as Percocet, duh. It gives me nightmares and I have a hard time telling what is real. I think this is not an uncommon side effect as I know Susan posted about hallucinations in the hospital but she had more of a sense of humor about it than I did. My cats both stayed with me day and night, like they were standing guard and I decided they were my petronuses standing guard against my dementors (Harry Potter reference- I really dreamed this at one point).

Once I recognized the problem, I asked for a different prescription (Vicodin) because I have had it before and do fine with it.

The problem with IV narcotics dropping my bp really low is a tricky problem. Everybody reacts to drugs differently and whoever was giving me dilaudid in the iCU was using their best judgement based on experience, but it reacted differently than what they were used to on me. But with the monitors they knew right away to give me a narcotic antagonist to undo the effect right away and solve the problem. I had had this problem with Morphine during a different surgery so it was not really surprising. I strongly suggest having a family member stay with you at first if at all possible.

They watch you very closely after this surgery. I think everybody on this board has had some kind of problem following surgery. As my surgeon told me at a preop visit, most all of them can me fixed. It's the 1-2% than cannot be fixed that you need to think about and not get caught up in the rest of it ahead of time. It's a big decision to undertake this surgery. I actually feel very fortunate to have dodged the big bullets and made it home ok.

I don't mean to negate your concerns about the drugs, but this is one of those things that can be fixed :-)

I think your younger age is greatly in your favor. Lose weight if you need to and walk as much as possible prior to surgery to get in shape.

[jrnyc]

hi Liz
i really believe the hospital nurse or nurses who were so
NOT helpful to you need to be sent back to school for a
refresher course!! that was disgusting tx to ignore your
requests....perhaps they were too busy gossiping at the nurses'
station....?
my mother was treated HORRIBLY on admission at nite, late, coming in by ambulance....she had a brain tumor...bless the ambulance staff....it was NOT their job, (once they got my mother to the hospital) to take care of her....but they did...as the nurses were "on break" and could not be bothered with an older woman who was in pain, who had a brain tumor, and who needed their attention....
i never forgot it...and it was decades ago...
so apparently, that type of nurse still exists...
and it was at the "great" Mt Sinai hospital in Manhattan....
(please read the word "great" with a sarcastic tone.)

nor did you deserve a lecture about taking pain meds...
again, they need to go back to school....to take some lessons
about why they entered the medical field, and about who is important (supposed to be the patient.....shocking to some people, but that is the truth) and the patient is NOT there for the convenience for them to have a job!!

sorry....it just makes me feel so angry that people with those attitudes are still in the "profession" decades after i watched how
they treated my mother. they are the least professional of all,
and give the good nurses a bad name.

hope you feel better really soon.
jess....and Sparky

[Lizardacres]

A few bad apples really does color your experience in the hospital. I had good nursing care on the day shift, but the night shift was definitely another story. In fact, some of my hallucinations were related to my fear of the (lack) of good nursing care on the night shift. I would lay awake at night knowing that I was on my own and counting the minutes until sunrise. So glad that part of my journey is over. Really glad I had family members that stayed with me most of the time.

My aunt travels a lot and her husband was admitted to the British health care system when he became ill and ultimately died (from lung cancer) during their last cruise around the British Isles. She is so impressed with the nursing and medical care her husband received during his three week stay there. No, there are no private rooms, but there are no nursing stations down the hall either. The nursing station for each group of patients in is the middle of the room with the patients. They don't spend their time chatting with the other nurses, they spend time delivering nursing care, the kind you would want your family member to receive. She was so impressed with a nurse who spent an hour rubbing the legs of a cancer patient who was complaining of itching on her legs who had no family and just talking to her. Their system is not perfect and waits can be long for elective surgery, but she felt that the care he received there was much better then here and is more patient focused.

Also, his entire bill for three weeks in the ICU was $30,000. Can you imagine what it would have been in the US?

[Lizardacres]

Thoughts at Three Weeks

I feel like I have turned a corner in my recovery at this point and things are easier. The first three weeks were rough, no way to sugar coat it. For me, the biggest hurdle was proper pain control. There was a poster a while back that insisted to her surgeon ahead of time that she wanted a pain management specialist on her medical team to write her orders for pain control in the hospital and he found one for her (turned out to be the anesthesiologist).

If I had done this, I feel my recovery would have been much smoother and more comfortable. This is the one thing I would have done differently given the chance and I would encourage everybody to take this approach. The problem with leaving this to chance is that you will have multiple persons writing med orders while you are admitted; your surgeon, his assistant, the hospitalist, etc. and they don't necessarily communicate well with each other. You may be asleep when they come by and not have a chance to tell them how you are doing so they may be getting their information from the nurses. Also, I think that leaving a lot of discretion to the nurses as to what you can have and how much you can have leaves you at the mercy of a single person for 12 hours that may not be caring enough or very competent and that is not a chance I would want to take again.

I don't mean to denigrate the nursing profession as there are wonderful, caring nurses out there, but you might not be lucky enough that all your nurses fall into this category. My discharge meds could have been better also. I had to have them changed a couple of times and part of the problem was that what I requested was not communicated to the person who actually wrote the orders.

I have just graduated to taking walks outside without support. I never did use the walker outside as it gets hung up on the sidewalk, so all along I have just been holding on to my husbands arm, which worked much better. I was really pretty wobbly the first couple of weeks and though maybe it was because I was anemic at discharge, and while that might have been part of it, now that I am walking on my own I realize that I am having to learn to walk all over again in a different way so there was more to it than that.


Before surgery, I had lumbar kyphosis and my lower back stuck out to the rear when I walked and I was leaning forward some. Now I have lumbar lordosis, my head is centered over my pelvis again and my quads are rather weak. I have to really focus now when I walk; butt now sticks out to the rear and stomach is forward. It feels so unnatural! Now I know why they want you to walk - it's a lot of work to learn to walk with your new bone structure. Has anybody else experienced this?

I'm up to taking two 1-mile walks daily and I'll probably keep it there until my next post op visit at the end of the month. I'm trying to focus on how I walk and relax into my new posture. It's a whole new world. It's amazing to be able to stand again without pain. Sitting is still a challenge, I need to use a chair where I can sit up perfectly straight and even then, I get tired after a while and have to lay down. Also, I find I have to change positions a lot to stay comfortable. Guess it will be a while before I am ready to return to work.

[fifa]

I feel like I have turned a corner in my recovery at this point and things are easier. The first three weeks were rough, no way to sugar coat it. For me, the biggest hurdle was proper pain control. There was a poster a while back that insisted to her surgeon ahead of time that she wanted a pain management specialist on her medical team to write her orders for pain control in the hospital and he found one for her (turned out to be the anesthesiologist).

If I had done this, I feel my recovery would have been much smoother and more comfortable. This is the one thing I would have done differently given the chance and I would encourage everybody to take this approach. The problem with leaving this to chance is that you will have multiple persons writing med orders while you are admitted; your surgeon, his assistant, the hospitalist, etc. and they don't necessarily communicate well with each other. You may be asleep when they come by and not have a chance to tell them how you are doing so they may be getting their information from the nurses. Also, I think that leaving a lot of discretion to the nurses as to what you can have and how much you can have leaves you at the mercy of a single person for 12 hours that may not be caring enough or very competent and that is not a chance I would want to take again.

I don't mean to denigrate the nursing profession as there are wonderful, caring nurses out there, but you might not be lucky enough that all your nurses fall into this category. My discharge meds could have been better also. I had to have them changed a couple of times and part of the problem was that what I requested was not communicated to the person who actually wrote the orders.

I have just graduated to taking walks outside without support. I never did use the walker outside as it gets hung up on the sidewalk, so all along I have just been holding on to my husbands arm, which worked much better. I was really pretty wobbly the first couple of weeks and though maybe it was because I was anemic at discharge, and while that might have been part of it, now that I am walking on my own I realize that I am having to learn to walk all over again in a different way so there was more to it than that.


Before surgery, I had lumbar kyphosis and my lower back stuck out to the rear when I walked and I was leaning forward some. Now I have lumbar lordosis, my head is centered over my pelvis again and my quads are rather weak. I have to really focus now when I walk; butt now sticks out to the rear and stomach is forward. It feels so unnatural! Now I know why they want you to walk - it's a lot of work to learn to walk with your new bone structure. Has anybody else experienced this?

I'm up to taking two 1-mile walks daily and I'll probably keep it there until my next post op visit at the end of the month. I'm trying to focus on how I walk and relax into my new posture. It's a whole new world. It's amazing to be able to stand again without pain. Sitting is still a challenge, I need to use a chair where I can sit up perfectly straight and even then, I get tired after a while and have to lay down. Also, I find I have to change positions a lot to stay comfortable. Guess it will be a while before I am ready to return to work.

Hi,

I couldn't agree with you more about every single thing you said. There are good nurse and bad nurses, and I think we've all experienced the best and worst of them! The same can be said for doctors, too.

You and I, I think, have the same trouble with meds. I've found over the years (I had my first back surgery in 1987) that things that would knock other people out only "speed" me up, and vice versa. Pain control and meds have always been an issue with me. Unfortunately, in my town, to suggest to a doctor that you know what works for you can be seen as "drug-seeking behavior," so I'm lucky to have a primary care doc who knows me, knows that I only ask for what I need, and he knows I know what works and what doesn't.

Also, and I probably won't phrase this correctly, in hindsight I wish I had had my husband with me 24/7. This is because he knows my behavior and my personality. In my opinion, it can be a bit dicey to ask someone who is completely messed up on meds to make decisions about her care. I hope that makes sense. I was too high to be in control of my own care, which (for me) made the hospitalization much worse than it had to be....I was too high to ask for what I needed. Sometimes, I wasn't high enough and was withdrawing, which also made me not the best judge of what I needed. For instance, when I woke up from surgery, my mouth was so dry. There was a male nurse with me (and my husband) and I asked for ice chips. That was all my brain could come up with - what I really wanted/needed was the Chapstick I had brought with me and/or one of those "mouth moisturizers on a stick," the spongy thing they dip in water and rub around your mouth. The male nurse told me I couldn't have anything by mouth (no ice, water, etc.) until I had had a bowel movement. That set me off into heaving sobs to where I couldn't even catch my breath. I think either I or someone else eventually pushed my PCA. The meds I was on made me lose my words, and I was drugged to where I didn't know I wasn't making sense. Anyway, you would think that nursing staff would know this kind of stuff, and if they can't give you ice chips, would offer you something!

I'm having the same trouble walking and sitting as you are having. My head is now centered over my tailbone, which it hasn't been for probably 10-12 years, so I am having a terrible time sitting and a rough time walking. I'm only walking about a quarter mile per day, if that, and I'm supposed to be doing at least a half mile. I just can't. Everything exhausts me. Taking a shower exhausts me. Letting the dog out (that's 14 stairs down and 14 stairs back up) exhausts me. I'm depressed because I don't feel like I'm "where I should be" at the three month mark.

Take it easy and feel better soon. I'm praying for you - you seem to be doing great to me - keep at it!!

Hugs,
Fifa