Announcement

Collapse
No announcement yet.

Long time no see...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Long time no see...

    Well, it's nearly three months post-op now, and I'm doing great. I've been doing walking in the pool 20-30min a day for rehab, and am building up to light gym work. It is a fine balance between not doing enough, and doing too much! I'm not really up to doing my university work yet, the tiredness is still lingering. But the pain is decreasing!

    When I read TX marinemums post about how she was feeling really grateful for the support she has been recieving, I didn't feel the same as I've been quite let down by my friends. Over summer (had surgery in december, which is the start of New Zealand summer) I saw only a couple of friends, and most of them were still around town. And, I didn't even get phone calls or text messages from them. Then the ones who did go away, when they came back didn't get in touch!

    It's been getting harder lately with friends. I think when people see me out and around, they think I'm better, when I'm still recovering. I don't actually think that anyone understands how major the surgery was, or what it means to have a surgery done that the surgeon hasn't performed before. I have realised who my friends are, and they are the ones that rang me and visited over summer through the hardest times. I realise how empty words of 'I'll be there to support you' are, when you don't hear from the person more than a couple of times. Then 'I'm sorry I haven't been there more, I've been really busy'... it shows you your value when it takes too long to text. I've invited people over, and they have kind of brushed me off... which sux. These were people who I saw a couple of times a week!

    It's really stink because I feel positive within myself, I am thrilled with the results of my surgery, and am really careful not to complain when I see people or make them feel uncomfortable. It is really awful that noone can understand this, and that I can't fake healthy so that people are ok. I think it's something with the younger generation in NZ, because the older people have been really supportive and caring. I just kind of feel forgotten about with my normal group of friends, because they are just getting on with their lives, and don't give me a passing thought.

    Sorry for the bleat, I just find it dissapointing and feel like I have given so much to my friends, always asking them how they are, what's happening in their lives, giving random gifts or coffees. It's like that stuff that I see as nice, they see as trying too hard and they back off. I thought if I gave enough last year, that I would get some support when I needed it the most.
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  • #2
    I wish I could tell you its just the young people in New Zealand, however it is just as common here in California. My daughters (20 and 15) have been my caregivers since my surgery in December. Their friends just don't understand that my girls feel obligated to make sure I am doing okay. My oldest comes home most weekends from college to help out and my youngest gives up doing things with her friends to make sure I am not alone for long periods of time. Their friends feel like my girls should be free to do what ever they want on their friends time schedules.

    I am so sorry that it seems your friends have abandoned you, I think it has a lot to do with their age. They probably have never had someone close to them that has had something as serious as your back surgery done to them. They are probably still a bit on the egocentric side and can't see beyond their own needs. As we get older we tend to see that others need us more than we do at a younger age. I hope your true friends are there for you. I am sorry I couldn't be more help, but know that your real friends will always be there for you. Try to remember that a lot of your friends are young and as they mature they will understand how big a deal the surgery was. Hopefully that will be soon and they will be less afraid to reach out to you. Good luck and just keep your chin up and work towards recovery!
    Geish
    47 years old, dx at 13
    +30* to the right, +60* to the left, +30* to the right
    Surgery 12-13-07 - fusion from T4 to sacrum.


    http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
    http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
    http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
    http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

    Comment


    • #3
      I am sorry to hear that you have not had the response from your friends you hoped for. I think a lot of people do not realize just how big of an operation this is that we go through. I have some big curves but some people would never know unless I told them and then when they see my x-ray they are in shock that our back could look like it does. Big or small surgery though, you should be able to count on support. Luckily, there is a lot of support from this group who actually knows what you are going through. I will repeat what Geish said and keep your chin up. Your friends will eventually come around !!
      Jamie Age 29
      Mother to a 6 year old daughter & an 11 month old baby boy.

      2000 Curves - 28/40/32
      2008 Curves - 39/63/44
      Surgery Date - 3/25/08
      T4 - L1

      63 degrees corrected to 15 degrees !

      Comment


      • #4
        Originally posted by nzgirl
        When I read TX marinemums post about how she was feeling really grateful for the support she has been recieving, I didn't feel the same as I've been quite let down by my friends.
        NzG, I'm so sorry you've been let down. Even though I posted a mushy grateful sonnet about support, the support I received was almost exclusively NOT from the people I'd expected.

        It hurts - a LOT - to have "friends" not ask if you need help, but even worse, to avoid you altogether. I think the worst for me was I couldn't imagine *ever* leaving them without support through something 100x less serious. And then *that* starts a vicious cycle of "what kind of character judge am I?".

        I have had a few friends who would drop everything if at all possible to help me, but the majority of much needed help I've received has been from people who were strangers when I started this journey.

        Moral support has come from all OVER this board ... there were days I probably would have had a melt down if not for Mariaf, Vndy, Trulyaries, The Suzee/Suzy's, LorDon, and so many others ...

        Physical help manifested in the form of PNutrro (who pep-talked me via email pre-op) and came to visit me in the hospital.

        Sherie stayed in touch via phone pre-op, phone post-op, showed up with groceries she refused to let me pay for, delicious home-made food, she removed all the tape residue, cleaned my back and redressed it ...

        Both these incredible ladies treated me - a virtual stranger - the way I's erroneously assumed some of my "friends" would. Among their many kind gifts, the largest - by far - was to assuage the sting from the absence of those who weren't there.

        One of the most valuable, albeit hurtful, parts of this surgery was to shake the wheat from the chaff friendwise. I'm sure it's a part of every rough spot in life (identifying who's a true friend), but I certainly eliminated several via this round.

        I didn't expect everyone to be at my beck and call, but it takes SO little (and means so much) to call just to say "I was thinking about you, and wanted you to know.". It's a bitter pill to swallow when you learn some people you thought you knew aren't capable of that.

        Big hugs to you, girlie. Hang in there. Those "friends" didn't deserve you anyway ;-).

        Pam
        Fusion is NOT the end of the world.
        AIDS Walk Houston 2008 5K @ 33 days post op!


        41, dx'd JIS & Boston braced @ 10
        Pre-op ±53°, Post-op < 20°
        Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


        VIEW MY X-RAYS
        EMAIL ME

        Comment


        • #5
          Pam,
          Nice to see you're back.

          Nzgirl,
          After my son's surgery,the people who disappointed me most were a few relatives! How sad is that? Now, ThAT'S a tough pill to swallow. Truthfully, I wasn't completely surprised at the shallowness of my brother and sister in law who didn't see fit to call after Chris was home from the hospital, send a card, offer to bring food, or attempt to visit. This is their nephew. Blood relatives. How sad is it to be so wrapped up in yourself that you can't see what is going on around you? Mind you, this is all happening during the Christmas season too. They did make an obligatory phone call the night before the surgery to wish him luck. Gee, could they spare it?

          On the other hand, people who I hadn't been in touch with for months called once they heard Chris was having surgery. The day we came home from the hospital, they were at my door with 2 meals and homemade cookies. Several other friends followed suit. My brother's mother in law has sent Chris 4 cards so far, but my brother and sister in law who live in the same town can't manage to visit him. I, too, have written off a few people who have shown their true colors. I got emails, cards and phone calls from people on this forum who I've never even met before and showed me more support than a relative or people that I've been "friends" with for years. I won't ever forget the acts of kindness that we have received since Chris' surgery. Sadly, I won't forget the disappointments either. Live and learn I guess.

          Hang in there. You're doing great and rest assured, you'll always be able to find friendship and support here.

          All the best to you.
          Lori

          Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
          Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
          Dr. Flynn is an AMAZING surgeon!

          Comment


          • #6
            Thanks heaps all of you, the exception definitly has been the other scoliosis folks on the forum, I have recieved great support on here. I am trying not to get too bogged down on what I didn't get, and focus on the good things. It still hurts a lot though, especially my big sister, who lives accross the street... she scheduled her home to be renovated during the same time as when I was having my surgery (she scheduled it after she found out, not before). She didn't lift a finger to help me, not even a load of washing. I had told her how much my partner was doing to help and how hard he was finding it. I had expected a lot more from her because she works part time, and I had dropped everything when she had her baby to help her a few hours every day so that she could rest. To top it off, she went away over the holidays and asked me to feed her cat!
            I really don't want to focus on the bad things, because I don't want to go through life being one of those people who don't do things for other people because they don't benefit from it. Before this surgery I really believed that what goes around comes around, so if I gave enough I would get back. But that's not true.
            Like you Pam, I have found though that support comes from unexpected places. I have been really lucky with my medical team, and some of the university staff. I have had people that I don't know very well give me gifts, and come and hang out. So that's been really nice. I think I've just expected too much from people.
            I am working hard in PT to get back up to standard fitness, and I've started a really good diet to get my bodyweight back down to normal (my jeans are SO tight!). I've started the zone diet and honestly it has been a godsend so far, not hungry between meals and have lost 1.3kg in the first week! I am so proud of my new body, that I want to look my best and show it off. I would love to blow people away that I haven't seen in a while with my new health!

            I am having some problems with tiredness still, and I've oddly started a period when I shouldn't (I'm on the pill), so I think my hormones might be out of whack. I just hope I haven't got an infection brewing! How would I know if I did? I thought if I am still tired next week I should go and get some bloods done.
            1994 curve at age 13, 70 degrees, untreated
            2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
            2007 26 degrees junctional scoliosis
            Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
            msandham.blogspot.com

            Comment


            • #7
              I don't think you're expecting too much, a phone call is not too much to ask. I also feel let down by certain people, my sister too, though I'm not too surprised. I've learned not to expect things from anyone, it's sad, but that way there's no disappointment when they don't come through for you. I just remember how I feel so I won't do that to anyone myself. On the other hand, my mom was awesome, don't know what I would have done without her support and the people here who were so kind and encouraging. I'm thankful for that.

              Glad to hear you're on the mend and hang tight to those friends who were there for you, I'm sure they're worth more than all the others put together.

              Comment


              • #8
                Interesting development... unrelated topic...
                My partner has just come to me and said that his work is paying for him to visit Taiwan next week, and would I like to come. Hell yeah! But what crappy timing! It's a 14 hour flight from NZ, but I could do it with a stopover in Singapore or Malaysia... really really tempted, but honestly, I won't be able to make the most of it! I think that IF I go, I could take it easy and take in some of the sights, rest in between trips, and go and do more stuff. I'm not likely to do permanent damage by going (right?) but could probably get sore while I'm away. We just don't have the money to go on a trip like this together normally, so having one airfare and flights paid makes it really tempting.
                1994 curve at age 13, 70 degrees, untreated
                2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
                2007 26 degrees junctional scoliosis
                Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
                msandham.blogspot.com

                Comment


                • #9
                  Pack your bags and go! When will you ever have an opportunity like this again? Just pack extra meds! LOL
                  Geish
                  47 years old, dx at 13
                  +30* to the right, +60* to the left, +30* to the right
                  Surgery 12-13-07 - fusion from T4 to sacrum.


                  http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
                  http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
                  http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
                  http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

                  Comment


                  • #10
                    No kidding, NzG ... I'm with Geish ... go for it!

                    My son is headed to Okinawa for 2 years of 2 month deployments in the South Pacific area (Aust, NZ, Japan, Thailand, Korea, etc.) and I am sooooooooooo jealous! Don't pass up your chance for a change of scenery.

                    It is probably EXACTLY what you need right now!
                    Fusion is NOT the end of the world.
                    AIDS Walk Houston 2008 5K @ 33 days post op!


                    41, dx'd JIS & Boston braced @ 10
                    Pre-op ±53°, Post-op < 20°
                    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                    VIEW MY X-RAYS
                    EMAIL ME

                    Comment


                    • #11
                      Hey Pam! your son will be in my neck of the woods! If he wants any suggestions of where is good to visit, I'm happy to oblige!

                      I'm just crunching the numbers for Taiwan, I'm crazy thinking about this!
                      1994 curve at age 13, 70 degrees, untreated
                      2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
                      2007 26 degrees junctional scoliosis
                      Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
                      msandham.blogspot.com

                      Comment


                      • #12
                        Originally posted by nzgirl
                        ... and would I like to come. Hell yeah! But what crappy timing! It's a 14 hour flight from NZ, but I could do it with a stopover in Singapore or Malaysia... really really tempted, but honestly, I won't be able to make the most of it! I think that IF I go, I could take it easy and take in some of the sights, rest in between trips, and go and do more stuff.
                        Think of it like this ... crappy timing (or what seems like) could seriously make for a MUCH more relaxing trip b/c you won't be forcing yourself to rush, rush, rush(!) everywhere ...

                        You're on the right track with the mindset of see what you want, rest, and then see what you want - or not ... even lounging along the way would be WAY more cool than lounging at home and thinking "DAMN, I could be doing this in Singapore, K.L. or drinking milk tea on Formosa!".

                        Instead of seeing it as bad timing, consider mmmmaybe it's an opportunity to take a vacation that's a "vacation" vs. a JOB - lol. I think most have forgotten the point of a vacation isn't to cram in "must do's" 24 hours a day ;-).

                        I still say "dooooooooooo it .... doooooooooooo it ..."

                        doooooooo it .... doooooooooo it (subliminal message - albeit a poor one ... I'm limited in my subliminal tools here - LOL)
                        Fusion is NOT the end of the world.
                        AIDS Walk Houston 2008 5K @ 33 days post op!


                        41, dx'd JIS & Boston braced @ 10
                        Pre-op ±53°, Post-op < 20°
                        Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                        VIEW MY X-RAYS
                        EMAIL ME

                        Comment


                        • #13
                          I'm thinking now, that although I 'could' do it, I really would get so much more out of a holiday in the pacific in a few months when it's winter here and I'm better. If I wasn't paying for my flights ( which is NZ$2000 so probably US$2500) then it would be a no-brainer... But when you add in all the extras (shopping!!!), and the fact that we're in debt, then it starts to unravel a bit. WAAAA!

                          I could very happily just hang out in a hotel and look at a different view!

                          My gut feeling is, that it is really not the right time. When you think about getting through customs, the long car trips to and from the airport, that the beds might be weird (princess and the pea)... and the cost even with having my partners costs paid. I have been really tired lately, and as relaxing as it would be, it will be quite tiring. I've just been talking to university people about how I've been finding it tough and I'm not ready to come back, so going on holiday won't really add to my credibility.

                          There's lots of reasons TO do it though, change of scenery, something different to think about and talk about, new experiences, new city, interesting culture, food (mmmm), rewarding myself for all my hard work!

                          I vote for saving up for a holiday in winter, when I'm feeling better, and can do the things that I would love to do on holiday like swim in the sea, snorkell, sail, and go exploring! A good holiday to one of the pacific islands from here, or Australia would be about NZ $3000 for both of us, so could be a good option.

                          Freaking tempting offer though! Damn sensiblity.
                          1994 curve at age 13, 70 degrees, untreated
                          2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
                          2007 26 degrees junctional scoliosis
                          Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
                          msandham.blogspot.com

                          Comment


                          • #14
                            Nzgirl -
                            I echo what everyone has said about friends' support/non-support. Going through a surgery like this really made me figure out who my real friends are and who are not. I'm sorry you aren't going on the trip, but honestly, if I think back to 3 months post-op, I would have made the same decision. Keep you chin up - it gets better.
                            Best,
                            Anya
                            "You must be the change you want to see in the world."

                            Previously 55 degree thoracolumbar curve
                            Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
                            19 degrees post-op!

                            http://abhbarry.blogspot.com

                            Comment


                            • #15
                              Slept on it...

                              nz-- I read your post last night--and the first couple of replies. I wanted to give it some thought before I responded--and it's much easier for me to think out what I want to say when the tv's not on and hubby is at work, so decided to wait until this morning. Actually, I would have written something entirely different last night. I kept thinking about it in my sleep (!) and then after I woke up and lay there in bed for awhile...

                              I totally feel for you because I am in the same boat. My surgery was last May-- and after the initial couple of weeks when people stopped by with food, etc., I really haven't had any visitors to speak of. I don't know what I expected (other than I thought I'd be going back to work last August and am still home!), so maybe I didn't end up feeling quite as let down as you do. It gets a little lonely, though, doesn't it? I've tried to fill my time with doing some things, but just don't quite have the energy/determination to stick with any. And there are tons of projects I want to do, but just don't feel like doing them... like working on the 3 books I've started writing while I've been home, scrapbook stuff, a counted cross-stitch that I've put at least 100 hours into, but have petered out on, etc., etc. My social life? It consists of "seeing" people at church on Sunday, with a cursory little conversation with some of them, coming and going. I have friends at school, but they are busy teaching so it wouldn't really work to stop by there. The main social connection I have these days is here on this site. You guys are family to me, and that keeps me from feeling totally alone (except for hubby, of course, who has been great through this all!) Of course, it's not that I crave company-- I like a little solitude. But this is a little extreme... But I digress from the topic, which is disappointment in friends. Maybe what I say will "hit home" with you a little, and maybe it won't fit you at all. So just take it for what it's worth to you.

                              A couple of thoughts popped into my mind. One was about roads. My friends are traveling in the fast lane of life... busy with their own situations and concerns, and they don't take their eyes off the road right in front of them for long enough to see that I'm having a rougher time than any of us expected. I'm the one way over on the shoulder, with 3 flat tires and steam pouring out of the radiator, trying to make forward progress but at about half a mile/hour... They just don't see me. You know the saying "out of sight, out of mind." Even the person whom I consider to be my "best" friend hasn't been by since right after the surgery. She emails me some. She has called once or twice. We visited at Christmas to exchange gifts, but I drove to her house. For my birthday I received a beautiful floral arrangement from her, delivered by the florist. Yes, I would have traded that for a half-hour's visit instead if given the choice, in a wink. I know she is busy so it's all excusable, but still doesn't make me feel any better. Two of my daughters live close enough to visit on occasion and it's wonderful when we can. I will see them this weekend--first time since Christmas. I am sooooo loooking forward to that! They live about 20 minutes from each other, but over 2 hours from us. One is super busy keeping her head above water, teaching all day kindergarten and being a wife. The other is in year 4 (of 7) at a university, taking a full load, being a t.a. in advanced math stuff, going to conferences, and doing research. They just don't have the time to do much other than email or call. But I know they love me and we'll get together when we can. And if there were a real problem, they would arrange to be here... (well, one would, anyway...) I THINK that's how it is with many of my friends. Those friends don't think and they don't know. And that may be how it is with some of your friends. Unless they KNOW you need them, they are too busy with their own lives to notice.

                              I also thought about a coin. There are two sides to it. Yes, it's true no one calls me or stops by. But then I thought (on the other side of the coin) -- how many of them have I called? Have I attempted to stay connected in any way? Sadly, for the most part the answer is no. At this point, I don't think I really want to either. That's a pretty lousy attitude! Oh well! So I have to put a little of the blame on myself as well. I could invite someone over. But I haven't... I could call someone up, but I haven't. (I am not really a phone talker, so that doesn't sound at all appealing...) Maybe you have done your part in trying to stay connected. But maybe, at this point in time, we just can't put that effort out. It sounds like you are busy getting stronger--so that's great! I am working on that too, and it takes a chunk of time and energy out of my day.

                              Maybe it will just be a matter of time, with you (and with Bryan's help) working away at the repairs--that you'll get those flat tires changed and eveything in tip top shape, and then you'll just cruise back into that fast lane and your friendships will pick back up. The main difference will be that you will know, when something happens to someone else, that people need their friends to show up and ACT like friends... So, in that way, this is making you a stronger and better person. Of course, you were that way anyway...

                              PS--I think your decision about holding off on the trip is a wise one in the long run. This (trip now) would have been good, that (vacation later) will be great!
                              71 and plugging along... but having some problems
                              2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                              5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                              Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                              Corrected to 15°
                              CMT (type 2) DX in 2014, progressing
                              10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                              Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                              Comment

                              Working...
                              X