Re: The Prodigal Daughter

[Guest guest]

Alpine,

I know others who had more similar experiences to you will have lots

to say, and advice that may help more....but I want to say that I

don't think what you are feeling is unusual...either in your body or

emotionally. I know I hit a slump around the same time in recovery

and it was pretty daunting. The fact that you have undergone surgery

twice in less than a year coupled with all the other issues you have

require you to be one strong, brave lady...and face it...none of us

are made of iron (although we sure have a lot of steel inside us!)

For me, one of the " mental " recovery challenges was seeing myself how

I really was....not how I WISHED I was. I was no longer

completely " able bodied " and I needed to accept that I would have to

find myself to a way of a new " normal " . That did not mean that I

wasn't ever going to experience joy or be able to do things...but I

was never again going to be able to do certain things...and I needed

to mourn that loss. I do know that doing things like meeting people

in person who were further ahead in surgery recovering helped...and

the group that went to the retreat really got a boost seeing how we

each have managed to move on since our surgery (well...except Peggy

and Deb who still were on the other side).

It sounds like you have taken all the right steps toward keeping

yourself mentally healthy....but be kind to yourself. Physically you

are far from over that 12-18 month period that many of us found

necessary to get ourselves " back " . I don't mean to underscore that in

a way that is depressing...just that there are no patients that I

have come across that feel wonderful at 12 weeks. I would offer that

if you feel that you are really unreasonably tired, perhaps you can

ask your PCP to take a look at your blood hemocrit...perhaps you

could take an iron supplement (if it wouldn't block you up!) or at

least change your diet to really boost iron. Once I finished the

percoset I did use a slow release iron tablet for about a month and

it seemed like it helped with my stamina. I also was doing more then

also...so that probably ultimately helped too....but I napped plenty

at 12 weeks!

I do hope your very best family and friends " stick " by you. It is

going to require much of them to be patient and wait for you to heal

and get some of your old " joie de vivre " back. You may loose a few

friends along the way. Perhaps you are already sensing that and wish

it were different. Many of us have really struggled with that issue.

I guess it is human nature, in all it's variability. Some family and

friends really rally when the chips are down....and some run for the

hills. It's not pretty, but it happens. I am sure your son is a

lovely young man. If he is struggling with his own demons I bet he

is scared out of his mind knowing that his beloved Mom has needs of

her own and can't help him as she did when he was young. And I bet

that can come out in some very negative ways.

Please don't stay away...we are all here to support you and we know

how hard the next months are going to be. If there is family tension

you are better off unloading on us than on them....we can take it!!!

I do know that you will feel better, slowly but surely. That I

promise.

Hugs, Cam

[Guest guest]

Dear Alpine,

So good to have you back, please stay close, we are here to support you.

First you have had double assaults on your body in a very short time span, and yes, you are going to feel like crap for awhile. I had my revisions 11 months apart, and have heart, many here that have had one revision struggle with pain, and body changes, it just takes time for things to come around, and you've done this whole process twice. While my pain disapated at three months, the exhaustion went on for months to come. I also had big struggles with my shoulders, they didn't like being even after all those years of being slanted and they gave me fits, and PT was necessary. Friends and family want you better already, afterall you have been recovering for more than a year, and they tire of it, well let me say thats their problem!!!!! You have to take care of yourself, and not push because of pressure from others, your body tells you whats possible and what not, if you feel tired, rest, thats what your body needs. Know that no matter how much you tell people about how extream this surgery is, they probably won't get it. They in their life time may have met someone who had one level fused, not even in the league with Cam's term" Of Spinal reconstruction", use that with them it give a more true visual for them. The only people in my life that even sort of get it is my best friend who's husband is a doctor, and friends that have been through cancer, and resulting surgeries and Chemo. Know I get your teenage son, mine is 16 and giving me fits too, a good kid just lazy about school, know his directing crap at you now is more about his age than you, teens are about the most selfish people alive. My oldest was truly pissed at me while I went through my three surgeries, it was her highschool years and she felt the whole world should have been about her. She still to this day has troubles with my disabilities, especially if others in public notice how I have to pick my leg up with my hand to get it into the car, also not my problem but her's. I guess my not being physically perfect, and that it sometimes draws some attention, bothers her.

Know that body adjustments to your new uprightness does take time, and a lot of that body and joint pain should come around with time, and maybe some PT. My shoulders are pretty danged good now, only are a bit sore when the weather changes. I do have soreness in my elbows brought on by picking up stuff to heavy with my grabber, I left it alone for awhile and greatly improved that. Know when you have one part of your body basically frozen as are torso's are, other areas will get overworked. Also our body stances were goofy for tons of years, and it will take time for muscle, ligaments to adjust to our new shape. Wish I could say it will happen tomorrow, but alas it just takes time.

Keep the depression in check, sounds like you are doing everything right to uplift yourself, but know that anti-depression med's might have to be played with till they find what works for you. Know that I'm pulling for you, that you have us to bounce this stuff off of, and know if I haven't gone through something you are going through, there will be other voices to help you through here.

If you need to talk, e-mail me privately and I'll send along my phone #'s .Kirkaldie@... . I'm so proud of you for all you have done to get yourself well, you are brave and strong, and you keep plugging away despite some tough times. Continue to heal, it just takes time, and know I'm pulling for you!!!!

Colorado Springs

[ ] The Prodigal Daughter

Hi Ladies,I know I'm a butt for not posting for the past 10 weeks. I've thought about it many times but didn't want to burden ya'll with my whoa is me stories. Today I have rethunk ) that idea and have decided to check in, and hopefully get some desperately needed advice and encouragement.I am now 12 weeks post op from my second revision in 8 months time and I feel like crap. I felt way better two weeks after the surgery. I've come to realize I was experiencing a sort of euphoria because the pain from the loose screws was gone, I could walk w/o pain and I was finally upright. But then the reality of the long recovery from two additional osteotomies has set in and I am frustrated, sad, depressed and confused by this seemingly never ending journey I am on. I try to hang on to the fact that it will improve and one day this will be behind me.I'd like to know how many of you that have had revision surgery have more than one osteotomy? Mellissa, I remember telling me that you had to have eight. Is this correct?Who is aware of their hardware? I currently have four rods, twenty screws and two of the galveston screws and it seems I can feel everyone of them. A couple of weeks ago I had x-rays taken and the facility I went to had me lay down on a steel table. I thought I was going to jump out of my skin because that hard surface exagerrated the feeling of all the hardware and it was WAY CREEPY! I am still on pain medication. I take it in the morning first thing out of bed because every inch of my body aches. And I'm not kidding, my neck (which I still need to have fused), my arms, elbows, my thighs, knees, ankles and of course my back. When the pain meds hit I'm able to move around and get ready for the day. What is really frustrating me the most is I'm not able to accomplish more than one task in a day. Yesterday it was grocery shopping, bringing the groceries in and putting them half away before I needed a 2 1/2 hour nap and was wiped out for the rest of the day.I then need to take pain meds again late afternoon as I begin to ache again and need to get something ready for dinner. It seems that I have a couple of good days and then a couple of bad days.I'm trying to do what I can to fight off the depression, I'm on depression medication, supplements, walking faithfully, I try to go outside many times a day to enjoy the garden, watch uplifting, funny television shows, reading, an occassional lunch with a girlfriend etc. yet I can't seem to shake feeling blue, frustrated and exhausted.While at the same time my recovery is going on, my family is going through many changes. My son, Sam, who is about to be 17 is dealing with his own issues as well and my husband and I took him to see a phsyciatrist (sp?) last week. He has been put on a new medication for depression and mood disorder and I hope this will give him a sense of peace and well being. He has been a tough child to raise from the get go and right now I am not his favorite person what so ever and he is taking his anger out on his sister and me. He has had very little to no compassion for what I'm going through and I take it personally.There are many more family dynamics issues that are going on right now that I won't unload here, but suffice it to say times are tough. Many friends have said that I'm not the same person I once was and I long for that happy, free spirited, adventure oriented me to return. Thank you ladies for listening.Alpine

[Guest guest]

Hi Alpine,

I am just 5 weeks post-op, but one of the things that I constantly keep in mind

is

something I read in 's diary that she posted, and have been confirmed

over and over

by other revisionees:

After 6 months, many were still questioning their choice of having surgery

After 9 months, their questions were answered, and they've never looked back.

So, I guess the answer is, as usual: Patience. With yourself, with those around

you, with the

healing process. And have faith in that healing process. Very few of us are that

young that

we can bounce back immediately, so it's unfortunately par for the course. For

scoli folks,

our entire life-lessons have been about the art of patience. Over and over and

over again.

12 weeks post op is not a long time for this type of surgery--and it's good that

you feel

frustration, because that shows a determination to heal.

in regards to your son, I agree with everything Cam said....17 is a tough age

for any kid,

and I'm sure he's scared of what you are going through and simply doesn't know

how to

express it. Coupled with the hormonal challenge of being that age, peer

pressure,

emotional highs and lows...it's tough for him, and if he seems resentful or

non-caring, I

would put money on the fact that he is terrified and feels like things are out

of control

right now. So, there you go...even more patience required--

Hang in there--

Love,

Edie

>

> Hi Ladies,

>

> I know I'm a butt for not posting for the past 10 weeks. I've

> thought about it many times but didn't want to burden ya'll with my

> whoa is me stories. Today I have rethunk ) that idea and have

> decided to check in, and hopefully get some desperately needed advice

> and encouragement.

>

> I am now 12 weeks post op from my second revision in 8 months time

> and I feel like crap. I felt way better two weeks after the

> surgery. I've come to realize I was experiencing a sort of euphoria

> because the pain from the loose screws was gone, I could walk w/o

> pain and I was finally upright. But then the reality of the long

> recovery from two additional osteotomies has set in and I am

> frustrated, sad, depressed and confused by this seemingly never

> ending journey I am on.

>

> I try to hang on to the fact that it will improve and one day this

> will be behind me.

>

> I'd like to know how many of you that have had revision surgery have

> more than one osteotomy? Mellissa, I remember telling me that

> you had to have eight. Is this correct?

>

> Who is aware of their hardware? I currently have four rods, twenty

> screws and two of the galveston screws and it seems I can feel

> everyone of them. A couple of weeks ago I had x-rays taken and the

> facility I went to had me lay down on a steel table. I thought I was

> going to jump out of my skin because that hard surface exagerrated

> the feeling of all the hardware and it was WAY CREEPY!

>

> I am still on pain medication. I take it in the morning first thing

> out of bed because every inch of my body aches. And I'm not kidding,

> my neck (which I still need to have fused), my arms, elbows, my

> thighs, knees, ankles and of course my back. When the pain meds hit

> I'm able to move around and get ready for the day. What is really

> frustrating me the most is I'm not able to accomplish more than one

> task in a day. Yesterday it was grocery shopping, bringing the

> groceries in and putting them half away before I needed a 2 1/2 hour

> nap and was wiped out for the rest of the day.

>

> I then need to take pain meds again late afternoon as I begin to ache

> again and need to get something ready for dinner.

>

> It seems that I have a couple of good days and then a couple of bad

> days.

>

> I'm trying to do what I can to fight off the depression, I'm on

> depression medication, supplements, walking faithfully, I try to go

> outside many times a day to enjoy the garden, watch uplifting, funny

> television shows, reading, an occassional lunch with a girlfriend

> etc. yet I can't seem to shake feeling blue, frustrated and exhausted.

>

> While at the same time my recovery is going on, my family is going

> through many changes. My son, Sam, who is about to be 17 is dealing

> with his own issues as well and my husband and I took him to see a

> phsyciatrist (sp?) last week. He has been put on a new medication

> for depression and mood disorder and I hope this will give him a

> sense of peace and well being. He has been a tough child to raise

> from the get go and right now I am not his favorite person what so

> ever and he is taking his anger out on his sister and me. He has had

> very little to no compassion for what I'm going through and I take it

> personally.

>

> There are many more family dynamics issues that are going on right

> now that I won't unload here, but suffice it to say times are tough.

> Many friends have said that I'm not the same person I once was and I

> long for that happy, free spirited, adventure oriented me to return.

>

> Thank you ladies for listening.

>

> Alpine

>

[Guest guest]

Alpine,

Reading 's post reminded me of one other thing I wanted to say.

You probably should not be grocery shopping and moving bags around at

this stage. If you are insisting on doing it, or family members are

letting you do it....please call a family meeting and tell them that

in your anxiousness to get back to normal you may have led them to

believe you were capable of more than you are. You really must not

try to do housework until you recover and have develped core muscle

strength again....that might be in another 6-9 months if most of our

experiences are average. And you must be sure your fusion is solid

enough to take the weight and your surgeon has approved new weight

lifting limits.

If your family is unable to help, can you hire house help to come to

you and shop and clean with you for a day (or afternoon)once a week?

After my husband returned to work at 12 weeks post op, I had a

cleaning girl come in once every other week and I worked with

her...she did all the low/heavy stuff...and I did what I could...wipe

counters/wash fingerprints off walls....the high, light stuff.

Fortunately my husband continued to grocery shop with me until around

6 months.

Getting outside help may seem expensive and unnecessary...but imagine

how expensive it will be if you have another setback. So remember,

it's not pampering, its getting yourself well!

Take Care, Cam

[Guest guest]

Glad to hear you posting again, Alpine. Sorry to hear of your

problems. I am only around 9 wks. out from my surgery. I have been

feeling extremely frustrated lately because I can tell my husband

wants me better, back to my " old self " . He and my daughter have to go

grocery shopping. I have a problem with a leg pain that comes from my

tailbone/lower back area and shoots down the back of my rt. leg. My

best time is first thing in the morning. Laying down always takes

away the pain, so sitting or standing basically " cause " it. As the

day goes on, it gets worse and I have to lay down more often. The

doctor knows about it, and they changed my meds and told me

to " walk " . Well, I'm getting tired of this pain. Yesterday my husband

asked if it was getting better, and I said I didn't know. I really

don't, and sometimes I think I'll never get better. Luckily, they

have me on Cymbalta, otherwise I'm sure I'd be bawling most of the

time. I haven't started driving yet, and it sounds like you're

driving. The car seat starts causing me the same pain I mentioned

above as soon as I start sitting in it. (passenger seat) I really

don't want to drive with my brace. Kinda scares me to think of trying

that! Basically, I'm stuck at home all day and rarely go anywhere.

(only been out 3 times since my surgery.)

I also agree with Cam--you're probably doing too much, and need to

back off and try to rest more. You don't want to cause more damage.

I'm trying to be so careful. I have started doing stuff like pulling

stuff from dryer, but not putting stuff in. I also can pull the

lightweight dishes and silver ware from the dishwasher with my

grabber, but not the pots and pans because I can't put them away. I

don't touch the groceries!

My thoughts and prayers are with you, Alpine. We all here understand.

Carol V.

>

> Alpine,

>

> Reading 's post reminded me of one other thing I wanted to

say.

> You probably should not be grocery shopping and moving bags around

at

> this stage. If you are insisting on doing it, or family members are

> letting you do it....please call a family meeting and tell them

that

> in your anxiousness to get back to normal you may have led them to

> believe you were capable of more than you are. You really must not

> try to do housework until you recover and have develped core muscle

> strength again....that might be in another 6-9 months if most of

our

> experiences are average. And you must be sure your fusion is solid

> enough to take the weight and your surgeon has approved new weight

> lifting limits.

>

> If your family is unable to help, can you hire house help to come

to

> you and shop and clean with you for a day (or afternoon)once a

week?

> After my husband returned to work at 12 weeks post op, I had a

> cleaning girl come in once every other week and I worked with

> her...she did all the low/heavy stuff...and I did what I

could...wipe

> counters/wash fingerprints off walls....the high, light stuff.

> Fortunately my husband continued to grocery shop with me until

around

> 6 months.

>

> Getting outside help may seem expensive and unnecessary...but

imagine

> how expensive it will be if you have another setback. So remember,

> it's not pampering, its getting yourself well!

>

> Take Care, Cam

>

[Guest guest]

Hi Alpine,

I have been wondering about you because we haven't heard from you. I'm glad you posted and let us know what's going on. Alpine, you are feeling everything most of the rest of us felt somewhere around the 12 week mark, both physically and mentally. My heart goes out to you for what you're going through.

At the 12 week mark, I was not going grocery shopping and I was not going out to lunch with friends or doing anything like that. I was still homebound except for short walks outside and I was still sleeping on the hospital bed in the living room. I was still on MS Contin. And I was still exhausted just by getting showered and dressed. I took naps, too.

So please do not be hard on yourself because you are not physically "better" yet. This surgery is not like any other back surgery. No other back surgery recovery period can compare. Of course, no one wants to feel as lousy as you feel now, but your condition is not unusual, and you will get better. Really. You must not be hard on yourself. There is no prize for a short recovery. Depression at this point is not unusual, either. Pain is depressing. Please try to work it out so that someone can help you carry packages and help you cook and prepare dinner. And if they don't understand, well, that's not your problem. Easy to say, I know. But you have to be a little selfish now. I told my pain doc the other day that I think one of the reasons I've been feeling better lately is that I've become selfish. He said I have to be selfish; selfish is a good thing for us when it comes to our physical well being..

Who ever made you lie down on a metal x-ray table is just plain cruel. There is no reason for that today. The newer tables have a nice cushy surface. Maybe you can go elsewhere next time.

Sorry to hear that you have family dynamics to deal with at this time. Of course, "they" say not to take some things personally, but when it is happening to you, it hurts.

So, please realize that you are not alone. We are here for you and understand what's happening to you. Please stay in touch. I think it helps not to be alone when you feel so bad.

Bonnie

[ ] The Prodigal Daughter

Hi Ladies,I know I'm a butt for not posting for the past 10 weeks. I've thought about it many times but didn't want to burden ya'll with my whoa is me stories. Today I have rethunk ) that idea and have decided to check in, and hopefully get some desperately needed advice and encouragement.I am now 12 weeks post op from my second revision in 8 months time and I feel like crap. I felt way better two weeks after the surgery. I've come to realize I was experiencing a sort of euphoria because the pain from the loose screws was gone, I could walk w/o pain and I was finally upright. But then the reality of the long recovery from two additional osteotomies has set in and I am frustrated, sad, depressed and confused by this seemingly never ending journey I am on. I try to hang on to the fact that it will improve and one day this will be behind me.I'd like to know how many of you that have had revision surgery have more than one osteotomy? Mellissa, I remember telling me that you had to have eight. Is this correct?Who is aware of their hardware? I currently have four rods, twenty screws and two of the galveston screws and it seems I can feel everyone of them. A couple of weeks ago I had x-rays taken and the facility I went to had me lay down on a steel table. I thought I was going to jump out of my skin because that hard surface exagerrated the feeling of all the hardware and it was WAY CREEPY! I am still on pain medication. I take it in the morning first thing out of bed because every inch of my body aches. And I'm not kidding, my neck (which I still need to have fused), my arms, elbows, my thighs, knees, ankles and of course my back. When the pain meds hit I'm able to move around and get ready for the day. What is really frustrating me the most is I'm not able to accomplish more than one task in a day. Yesterday it was grocery shopping, bringing the groceries in and putting them half away before I needed a 2 1/2 hour nap and was wiped out for the rest of the day.I then need to take pain meds again late afternoon as I begin to ache again and need to get something ready for dinner. It seems that I have a couple of good days and then a couple of bad days.I'm trying to do what I can to fight off the depression, I'm on depression medication, supplements, walking faithfully, I try to go outside many times a day to enjoy the garden, watch uplifting, funny television shows, reading, an occassional lunch with a girlfriend etc. yet I can't seem to shake feeling blue, frustrated and exhausted.While at the same time my recovery is going on, my family is going through many changes. My son, Sam, who is about to be 17 is dealing with his own issues as well and my husband and I took him to see a phsyciatrist (sp?) last week. He has been put on a new medication for depression and mood disorder and I hope this will give him a sense of peace and well being. He has been a tough child to raise from the get go and right now I am not his favorite person what so ever and he is taking his anger out on his sister and me. He has had very little to no compassion for what I'm going through and I take it personally.There are many more family dynamics issues that are going on right now that I won't unload here, but suffice it to say times are tough. Many friends have said that I'm not the same person I once was and I long for that happy, free spirited, adventure oriented me to return. Thank you ladies for listening.Alpine