The burn from Tuesdays PT lasted for 24 hours… my PT doesn’t want me to hurt/burn that long, so he changed some things up today. We did more than we ever have before, but we did it in the middle of muscles where I have more strength and he made it harder by giving me squishy things to stand on to make it harder to balance, not holding on to things, or closing my eyes. I swear he thinks this stuff up to make me feel silly It works though, I feel silly AND like I am getting stronger. I know that I must be doing well when he tells me to close my eyes
I asked him how he would define my progress – sadly he had a hard time too, no real answer I can report back… your not where you were, but you wouldn’t be happy if this was as good as it got would you? I answered no, no, this would not be ok.
It’s hard to quantify – I have been dysfunctional for so long that I don’t even know how to describe it accurately some days. I don’t know if I am effectively communicating to you all that it’s hard, and some days it really hurts.. but that this, “really hurts” is so far better and different from the before, “IT REALLY HURTS!” That I don’t know how to explain it any better.
This hurt is manageable, it doesn’t make my head hurt, changing positions or the slight tilt of a foot can change the pain or discomfort to nothing… UNLESS I over do it – standing too long sitting too long – it burns like before, but not as bad and not in as many places… it’s more specific – and even that changes as I gain strength. It can also be stopped with easy treatments like ice, rest, and over the counter meds – like once- not every 4 hours….
It’s HARD to not do, to continue to lay in bed and rest… to think in terms of if I continue to sit or stand or whatever that I am CONTINUING to promote dysfunction in my muscles. The idea that I am reinforcing a habit of over use AFTER going through the mental agony of choosing surgery is enough to make me crazy. I am more surrendered to the idea of rest being the best thing I can do than I was a few weeks ago. It’s hard to stay in this mind frame though.
My daughter literally has 3 shirts left in her closet. I don’t think my son really cares about anything but his PJ pants being clean – laundry is gong to start walking down the stairs by itself… I managed a load yesterday, but with PT today I can’t do more, it will have to wait until my body recovers. It’s hard to stop, and let those things go undone, or wait for someone else to do them.
I started using a product yesterday called Intensive pain relief by thunder ridge…. it’s a herbal mixture that is suppose to help with inflammation – that’s the main reason for the burning sensation I am experiencing… it has emu oil and a bunch of other natural anti-inflammatory stuff in it. I normally don’t buy into things like this – I mean in principle it makes sense, but it’s just not my natural head space, call me a skeptic. I used it yesterday and it really did calm the burn a lot. I brought it today for my PT to use during the massage part…. So far I am not on fire like I would normally be by now…. we are going to keep using it and see what happens, but for now I am MUCH more comfortable. I really feel 95% normal when I am lying down. Sitting and standing it just feels like there is ENORMOUS pressure in my hips/outer ends of the glutes, and if I stand or sit past that sensation OR do the stairs too much then the IT bands and all that stuff in the front gets involved… I like to keep that quiet as those were all new sensations for me and I didn’t’ care for them at all!
I guess over all I feel like I am more accepting of where I am at in the process. I’ve always known my personal journey would not be short with this. The victories are small and sometimes go unnoticed by my family and friends. My husband continues to be very supportive and encouraging, helping where and when he can – the kids have kinda adjusted to this new version of normal for now… I know its still hard on them all, but it’s peaceful this week and a lot of that is because I let go of a lot of my own expectations… like I am just not gong to worry about my daughters jeans that just ran past me without a body in them
I find that I am having to adjust all over again, things that I use to do to help cope with the pain, ways I sleep, sit, walk… I am having to undo them, oddly some of the things that use to bring pain relief can actually cause pain now.
I am starting to learn to live in this body without constant mind numbing pain. It’s wonderful and challenging all at the same time.
It’s humbling… having to give in to your body where before I use to push past and through whatever I felt…. but it’s peaceful for me, at least today it is… I think maybe it’s a form of acceptance… I am finally able to accept that I can’t…. maybe it’s because I know somewhere down the line I will be able to say I CAN! (Hindsight moment: this seems to be part of the recovery pattern for me, new steps forward that bring peace followed by a set back that offers frustration, that leads to new steps… rinse and repeat. Don’t worry if your all up and down emotionally at this point, your adjusting to A LOT of new things!)
A small miracle happened today… I think I have mentioned that my PT has only treated 5 other cases of SI issues before me… I always add to that – “that you know of” and he smiles kindly at me… I am sure he’s rolling his eyes in his mind I often suggest,” Don’t you think many people with low back pain are misdiagnosed…”
Today he told me a story about a patient that came in with one diagnosis and after checking him/her out really came to believe that it was his/her SIJ out of alignment causing his/her pain and is treating for that with the patients permission…. The patient is already feeling better!!
I loved him to death before this, but I respect him even more today, if that’s even possible… someone walked into a rehab place with a wrong diagnosis and because I didn’t stop fighting for myself to get help and get fixed, and because My PT was willing to keep learning – one of “us” just got the help they needed without wasting a decade or more of his or her life…. What a Victory!!!!!!!!!!
11 weeks 1 day
Last night I went to a benefit concert for a group that is near and dear to my heart. Before becoming a mom and a “cripple” I worked for a Youth Ministry called Young Life. One of my kids that use to go to Young Life that was very near and dear to my heart is now a professional musician and producer. He came back home to do a concert to help raise money for the local ministry. This was one of those things I simply was not going to miss. I tried so hard to be good and save my “up time” for this event.
I started being up at 5:00 and ended at 11:00. I walked in strong and able to hold my body up. I talked with all kinds of people standing and sitting – I saw people that are now in there 30′s that were YL kids of mine 15 years ago… as well as college kids that are leaders I have recently trained and are running the ministry right now.
I switched between sitting and standing and I realized I was hitting my wall. I was going to have trouble getting up the stairs to get out of the concert space, but at the same time I was being blessed beyond measure listening to my friend sing and tell his stories. We were in a church basement and I decided to simply go to the outside edges and lay down to finish watching the concert to try and limit my damage. I knew as soon as he was done I would need to go, but that socially it would be hard to leave. I WANTED to stay and talk with everyone that was there!
I was blessed beyond measure by some of the things that were said to me after the concert, – I am glad I stayed, but it was so very very very hard to get up the stairs – it was slow and painful – like everything in my lower half was straining to work. After I got up the stairs I felt my gait change to that swing around kinda thing we do… my glutes were no longer engaging. I shuffled along with smaller steps; gingerly making my way to the car, hand on the wall to support myself, I am pretty sure I would have fallen otherwise. I slowly and deliberately got out of the car once we were home, it was hard, held on to my husband for dear life getting up the 2 stairs into the house, got up the stairs to the bed room and laid down. I started wondering how much damage I had done… My husband brought me ice and I started wondering if I should call for a PT appointment in the am… Within about 30 minutes the burn kinda stopped (granted my bottom was frozen by the ice, but things were calm enough that I drifted off to sleep.
My husband got the kids up and I was treated to breakfast in bed by my children… they knew mommy shouldn’t get downstairs yet this am… they are so dear! It’s now 9:00 kids are off to school, I had a chance to stretch and rest. I can walk again – there is some swelling in the hamstrings (where we worked in PT) and some medium pressure/tightness on the right butt cheek… my gait is still not quiet a normal stride but I don’t need to hold onto the wall and my pace is near normal…. it is NO where NEAR as bad as I thought the damage would be… a quiet day of rest and stretching should knock this out. It’s a victory and of that I am glad Still think I am going to try and get into the PT today though…. I am better than I thought I would be but still not good enough to go 5 days before seeing my PT.
PT took me in as a mercy case at the end of today – long and short of it – he taped me to help take the stress off the piriformis and the glutes so they don’t have to work so hard and can rest a bit over the weekend. It’s the strangest tape pattern I have ever seen and I am a little embarrassed at how much skin needed to show to tape it, BUT it is helping. I was weak and hurting going in to see him and came out feeling much much better. He threw everything and the kitchen sink at me: stim, ultrasound with biofreeze, massage, stretching, more stretching, a FANTASTIC IT band stretch, and then the kineseo tape.
I did recover better, but I did so much damage last night that I knew waiting till Tues at my next appt would be a bad idea… I am glad I got myself help when I needed it – I think it will make for a nice weekend of rest
Kinda love my PT today.
11weeks 3 days
I am happy to say that as of this morning I am recovered from the over doing it of Thursday night – I am humbled and amazed at my body a little bit (well that and the hands of my PT).
It’s Sat morning and I have already done my at home PT stuff for today, and I feel good.
Yesterday I was such a ball of emotion from the contrast of the kids that were so thankful for the TIME I had given them and my body breaking apart on me as I was trying to listen… I didn’t have time – I’ve been out of time for so long that it hurt to remember when I had it.
Each of them thanked me in one way or another for the time I spent with them listening, hanging out, just being… I realized that I had LOST the ability to do that with SIJD. It took my ability to just sit and be with people to love them and to listen… it hurt, like a sword through my heart, … more than I can articulate…
Seeing my healthy past, contrasted with my broken past and not knowing when this season will end, it was too much for me yesterday, I just kept crying on and off through out the day… mourning for bits of my life that were lost along the way – fear of if I would ever have a body to match my heart…. very real and very disheartening fear.
I long for my body to be able to keep up with my heart. I am less up ended today emotionally and I can see that it will come; I am encouraged over and over by so many of you. Thank you for helping to keep me focused on what it important – that healing IS happening now, that for whatever reason some of the things I share here DO help some of you and ME… That while this may last awhile it will not last forever, I am better today than I was 4 weeks ago, I am far better today than I was 12 weeks ago… and I will be better than this 4 weeks from now….
When you spend so much time focused on just trying to get through the day it’s hard to remember that’s it’s ok to look ahead.
11weeks 4 days
It’s Monday now and I am amazed at my body a little today.
I took the tape off my left side (good side and I can feel the added stress of being up and around… it’s not bad, it just feels a little tired, unlike the right (my weaker side) that still has tape on it – and I feel fine.
I was able to do all my exercises yesterday and walk for 20 minutes around my neighborhood with a friend. It was a beautiful day here and I even took my little dog with! I felt so normal…. it was like a breath of fresh air. I sat with my friend for a while and even did the stairs a few times with no additional pain.
I know on my own (without the added help of the tape) that I cannot do this, but it was a nice glint of the future.
I really took stock today of how my world is expanding post surgery –
from my tiny little room –
to the upstairs –
to the upstairs and main floor –
to my street
to my block
to my neighborhood
my world is slowly expanding it’s baby steps, but it’s progress.
I really don’t know that there is any way to communicate how hard and humbling, and encouraging this journey is…. I just know that I will be glad when it’s over.
There are a few things that I have not written about – mostly because I wasn’t sure they were related or relevant, but as always with a life of SIJD of course they are….
I have 2 disk herniations in my neck due to “adjusted posture” from SIJD… as I have started being more upright and continuing my upper body strengthening portion of PT at home there have been real boughs of pain with that. Headaches, arm and neck pain… it’s overwhelming sometimes, all the things that don’t work right…. The pains it causes…. I know that it is due to muscle weakness and that in the end it won’t hurt again, but it’s a frustration that everything is so weak and all needs my attention to get stronger.
I have also noticed that my menstrual cycle has been different since the surgery. I wrote the first month off as a fluke – the second as a coincidence, but this last one it became hard to ignore….
Since my initial injury my cycles have been HORRIBLY painful… like my insides were dropping out and terrible back cramping… but such a heavy feeling of pressure inside he pelvic cavity. Since the surgery I have had normal short periods, without the feelings f my uterus dropping out of my body… I still have no idea if this is due to less activity or my new anatomy… but figured it bore mentioning.
The last observation I had was the longer I went with SIJD and the weaker I became I also lost my ability to reach orgasm… that just sucked – a lot… I mean sexual intercourse was hard enough in that I knew I would be in a world of pain at the end, but at least there was a payoff… but as the years wore on, the muscles involved in orgasm (as well as the psychological toll) took away the pleasure.
I have noticed that I have some inner pelvic strength returning and I can do kegels without pain, but holding a contraction of the muscle is very hard to do for more than a split second.- I feel stronger in that area from many of the lower ab PT exercises and can feel contractions of the lower abdominal … I am hopeful that my ability to experience pleasure will return as my strength does. My husband and I have not yet been brave enough to try to be intimate yet… but I am prayerful that it will go well when we do.
12 weeks post-op (3 months)
I am a little speechless. I can hardly believe I have been on this side of the journey for 12 weeks already!
What can I do now that I couldn’t do 12 weeks ago? A LOT!
I can take a 20 minute walk without pain or without my muscles breaking down.
I can squat down a few times a day to pick things off the floor without pain.
I can ride in a car as a passenger and NOT want to kill the driver for every turn and stop. It doesn’t hurt anymore to be a passenger in a car.
I can do a 2-3 bag grocery shopping trip, and I don’t grip the cart like I might die if I didn’t have it.
I can climb the stairs without pain or stress on my body a few times a day – depending on how much I have done already.
I can keep my pain under control with ice and stretching and the occasional Tylenol.
I can have real and meaningful conversations without trying to focus through pain.
I can sleep like a baby without medication or waking up.
I can sit in a chair without moving to get comfortable.
I am weaning off my anti- inflammatory medication. (hindsight moment- this didn’t work at all! Still far to much of an inflammation process going on as I try and strengthen new muscle groups, much more comfortable just taking it… I’ll worry about getting off meds later! Until PT is done and I am strong I will just keep on taking them.)
What can’t I do yet?
Flip turns – yes it seems silly, but it’s a normal activity for a swimmer and I can’t do them yet – not enough strength or stability yet to do them – but I CAN push off the wall with both feet this week.
I can’t bend over as any times in a day as I need to as a Mom of 2 young kids.
I can’t shop all day.
I can’t say I am totally pain free yet – I still feel the body give up after being on my feet for so long… but I can say that gets a little longer and a little longer each time I look back.
I can’t say every day is an easy day – it’s not. Yesterday was another one of those frayed nerve feeling days.. but it wasn’t as intense or as long as the time before.
I was watching biggest loser last night and the Olympic gold medalist said, something to the affect of I am getting my body back… and I want to show people what it can do!” For the first time ever watching this show I began to think… yeah know… in the future… I just might be able to handle one of those Jillian workouts! I have NEVER thought that before EVER. I have always thought,” Man if I even tried to do ANY of that I would be on the ground screaming in pain for the next 2 weeks!”
I still love heading to PT every week, its where I REALLY see the difference in what my body can do now verse what it could do before. I would still wash my PT’s car and do anything he asks of me as long as he promises massage and stretching… really if I had to give up the massage I would, but no stretching- no bridges
He REALLY kicked my rear today, I am really tired, but encouraged – I have come to learn that this tired feeling, this weak and slight burn… it won’t last – it will fade tomorrow and that is a gift… knowing the pain WILL end. I am confident in that now… flare-ups WILL die down; I CAN adjust my life until I get stronger still. This really won’t last forever, even on the days it feels like it will.
We have progressed to single leg exercises. I can do a few sets before wobbling like a bowl full of jelly, 3 weeks ago I could barely kick my leg out behind me and today I did lunges on a bosu ball! He upped all my exercises today and while we still didn’t do a ton – we did more than we ever have and it felt good! I still can’t do straight leg raises ( lying down) – I mean my leg feels like it weights a ton, but I don’t need my knee bend and right up next to my butt anymore either.
He has continued to use the kineso tape to help support the weaker glutes – I am grateful for this – it really helps to keep the burn and pain at bay… I am all for the taping, and for the first time ever I am glad it is in a place no one else has to see it – no one knows it’s there but me unlike the SI belts and tens units or the ice pack/heating pad that I wanted to surgically attach to my rear before surgery!
It’s progress; I can feel the core getting stronger and the glutes getting stronger enabling me to do more. It’s a balance of my endurance and my strength now. I can see where we are headed – it doesn’t seem as distant or unattainable as it once was, it’s still out there in the distance, but I feel like I can see the lights of the city and am not just lost in the forest wondering where I am headed.
I don’t have much left for today – I laid it all out at PT, but that’s ok, it was worth it, I will rest now. I’m learning to take care of me again and not just keep pushing because I have to.
12 weeks 1 day
So, yeah, it’s 32 hours since I left PT-
I got up and felt okish – not fantastic, but not as weak as I did yesterday… the burn left, but I still felt weaker than I usually do when I wake up.
I didn’t take my anti- inflammatory… I am taking it every other day to help wean off…. ( do you see how stubborn I am, don’t be this way, it just hurts more )
I got the kids off to school
sat at the computer and typed
laid down at the computer and did stuff
at 10:00 I went out to run errands
12:00 stopped at to do a random act of kindness for my Daughter in law and played with my grandson – we played trucks- on the floor – and it was AWESOME. The delight in that 3 year olds eyes when Nana said YES she could play trucks was OUT OF THIS WORLD!!! *
came home at about 12:45
muscles in the side of the hip ( glutes and piri?) started pulsing
heat- ok that was a bad idea
tried to sit downstairs with the rest of my bible study… can’t focus and can’t get comfortable
try more ice and at home PT
surrenders and takes pain meds ( tramadol)
frustrated and sitting on a tennis ball
still can’t find stupid tens unit… haven’t used it in awhile and can’t remember where I put it… sigh…
cry some more
hubby will come stretch me when things are done downstairs… it won’t be as effective as at PT- kinda frustrating, but I love him for trying
hoping sleep will relax stuff
then as I am typing I remembers I didn’t take my midday dose of muscle relaxant…. smack face with palm!
sheesh – bet that might have helped!
will take that now… good googa mooga!
and hubby saves the day and found the tens unit… in a drawer with my discarded Si belts LOL
* – yes I have 2 grandchildren. 4 and 3 and they light up my life… some of you are doing the math on this thinking… ummmmm wait….. so here’s the quick version of the story.
Prior to SIJD taking my brain, will to live, and body, I was in full time youth ministry. When I was 19 I met a young 14 year old boy that was a ward of the state in and out of foster care and just had a rough go of it… I did what any other Young Life leader worth their jeans would do and I spent time with him and his few friends. I’d pick him up for ministry stuff and talked… a lot…. and listened… a lot… after about 6 months I was driving him home one night and before he got out of the car he looked at me and said… can I call you Mom? I was dumb struck I had no idea what to say… in my silence he said – you have been there for me more and longer than anyone else… I think that’s what a Mom does…. so I’m calling you Mom. He did and he has for 17 years. He’s my boy – not legally, not in name, but in my heart. I have been seated in the spot of honor as his Mom at his wedding, danced with him as I cried at his wedding – been invited to participate in the birth of his 2 children and now have the honor of being called Nana by two of the dearest children in the world that are not my own. I love him like my son and they are our family – and being able to FINALLY get on the ground and play like a Nana should… heaven pure heaven!
12 weeks 3 days
I had a nice weekend. We traveled up to Chicago to see my folks and eat at my very favorite restaurant in the world, Ron of Japan…. should ANY of you ever be in Chicago let me know… we will go!
The trip wasn’t too bad, I got pretty tight by the time we got back home. 2.5 hours there, time with the family, and 2.5 hours back. It was a full day. I used my arsenal of tens unit, emu cream, drugs, and ice. Not narcotics, just OTC pain meds, and muscle relaxants that I am still on 3 times a day but it’s really more like 2 times because I keep forgetting that midday dose.
Today I swam again – that is such a blessing to me – felt stronger still and even did a little bit of kicking butterfly- so good for the abs and I got to push off the wall with my feet! It was harder than I wanted it to be, the wall pushing, I can see where my PT doesn’t see enough strength and stability in the muscles yet…. but it was nice not t have to TOTALLY stop and turn around I gotta be careful not to come in too fast though! I felt SO strong in the water; I haven’t felt that strong in years, it was wonderful. I kept it too 600 yards and was like a wet noodle trying to climb up the ladder to get out of the pool. Glad my hubby was there with me, I needed him to stretch the IT band and some other things in the side of my hip/rear end. So glad he is willing to play part time PT and coach
12 weeks 4 days
Aaahhhhh getting stronger means my PT is going to delight in bring me to the brink of break down each and every time from here on out. I wish I had had a video of today’s session for you all – no really I do, I was thinking of you all while we were working – even said it out loud.
Today I got to walk around the office with a bungee cord around my middle, cushioned by a pillow, with my PT pulling on said chord behind me… for added resistance! I felt REDICULOUS, BUT I was able to do it. 1 lap forward 1 lap around the office backward… I am glad the office isn’t too big, it was HARD! Lots more standing with resistance work and it gets a little easier every time.
I had a weird thought today… the next step in my recovery is really that I will be living more of my own life than I have in years…I don’t know what I am suppose to do with that…I mean I realize it sounds crazy, but I am a little scared, nervous, about how that is going to go…
It’s unknown… I don’t’ do well with unknown… I am sure it will be great, but wow, it’s so new….
So in the world of good feelings and looking to the future I also had a VERY real moment of my past that actually made me yelp in PT today. I asked to have my PT stretch something in the front of my hip before he turned me loose…. When he went to see the Right side compared to the left as soon as the ligaments around the SI started stretching ZING burning pain JUST like before surgery… I yelped and he put my leg down… it was momentary, it was horrible…. I must have looked like a dear in headlights and on the verge of losing it… I managed a,” too much stretch on the SI ligaments?” PRAYING he was going to say yes….he smiled and said, ” yes – it’ll settle down in a second.” and he was right… but OH MY – that was a horrible reminder of what that felt like ALL the time…. it scared me that the burn was here and reproducible… it’s been 12 weeks since I have felt that…. goes to show that there is still much more healing to do inside my body even as the muscles get stronger… I feel like I have progressed from a baby to a toddler to maybe a toddler almost ready for preschool….
I forgot to tell you all… I asked about if I needed that piriformis shot (cortisone or Botox) I have been dreading that..
My PT said no he really didn’t think I would need it unless things crashed downhill over the next few weeks. I was SO excited to hear that…. I believe he said something to the affect of the muscle felt better than it ever has.
Made my heart leap a little
I just got home from an 18 min BRISK walk with my little nursemaid Milo – it was great! A chilly 58 here, but a BRISK walk – I started breaking down at 16 minutes (gluts do less hip flexors do more… =bad) slowed down and just took my time the rest of the way home… I will measure it tomorrow, but I think it was nearing in on a mile
So many things to share …
I am stronger, I am able to do some normal household stuff a load of laundry here a load of dishes there… picking up after the tornado that is my kids If I do one of those things, rest, do another, rest do another, rest…. I am pretty darn ok… and by rest I mean LAY DOWN… not sit up… sitting is still exercise in my head… it uses so many of the muscles that are weak still that I try to LAY when I rest….
I continue to be annoyed at all the muscles that abduct the hip/leg the burn, it is less and less and they are getting stronger, but it’s still baby steps, they are just coming faster, but never fast enough!
For instance I was walking the dog the other day and normally if a kid was coming down the sidewalk I would find the nearest concrete to stand on to get out of the way – walking over uneven ground was so painful before the surgery… just to walk in my own yard was hard. Yesterday I chose to try walking in the grass to avoid the kid on the bike and continue my walk… ya know what… NOTHING HAPPENED… I just walked! I smiled and rejoiced. So little, so silly, but I realized that I will be able to go to the 4th of July fireworks in my home town this year and walk as much as I want through the grass. I won’t have to medicate before we go because the walk alone will be too hard on me….. Really… amazing!
My IT band and illiopsoas still remain tight in their quest for stabilization of my body sitting and standing (and a bunch of other muscles too I am sure). Being able to have my husband release the illiopsoas is very helpful right now. Really any time my PT can pass on stretches or releases that my husband can do help tremendously at managing this when I am not at PT. Let’s face it, that’s most of the time!
Here’s a look at PT now…
We are all done with ultrasound and stim in PT
I go in now and he still massages the worst spots
We stretch everything out – today lots more in the front than the back side… for the first time ever we didn’t need to stretch the left piriformis…. it was quiet and said NOTHING!
Yeah, take a moment and reread that
Then comes exercise after exercise
lots of calf raises on the foam beam – coming up on 2 feet and down on one…. hard to keep pelvis neutral and engage the correct muscles….. The idea is too keep the body centered but I had to lean to the supporting leg more to keep from falling over…
mini squats with a ball behind my back and a low resistance Theraband ( yellow) around my knees – bend and abduct – rinse and repeat a lot:)
duck walk down the longest most never ending hallway EVER! glutes a burning after this one that was tough stuff.
While we were doing single leg stands he puts a band around my ankle and I pull the leg backward… I felt all funny like I wasn’t doing it right… I prefer to physically touch the places he wants muscles engaging so I can FEEL them move…. I made my observation that I felt like I was still tilting the pelvis forward – he said I was indeed -so I started over – pelvic tilt to neutral – THEN tried to engage the glut min and glut medius… they don’t fire real strong so it’s still very hard to feel them moving. I was told to be patient Yeah right, me be patient?!
I said I still feel like the lowest set of abs are still so much weaker than the upper ones…. we talked about Kegels… I still struggle to REALLY get a good tight grip for those… he said keep working on them and they will help with the lower abs as well…
Eval gets sent to the Doc today… I asked what would be sent… he said (in my translation) inflammation is down and more handle-able with less modalities (heat, stim, ultrsound) and gaining strength…. I probably only need another 4-6 weeks of therapy he says…..
I freaked out…
I mean I know I’m getting better, but the idea that I could be on my own and strong enough to move on to handle things on my own- well it was scary. I really didn’t think life without a net was coming so soon. I kinda figured I’d be at closer to 50 or 60% of a full day in life before that day came….
After my freak out of WHAT?! He said, to comfort me I am SURE, well… maybe we can do once a week for a little while after that….
Good Lord, I am not ready to fly on my own yet in so many ways…
I am really having trouble adjusting to … well… as a friend put it earlier, living!
For the first time in so long I don’t have to think about what treatment comes next or the consequences of something like a walk to pick my kids up from school, or hanging out with a friend…. I mean I do have to be careful, but I can read my body so much better it is easier to say…. I need to stop now….
I went to Target today before PT and set a timer for 20 minutes not just so I wouldn’t be late for my APPT, but because that is about when I start to break down…. normal people don’t have to do that… but ya know what…. it’s 6.5 hours past therapy. I went to the store, I went to PT, I watched my grand kids for an hour and played with them on the floor and did the stairs a few times for lost items, I laid down for an hour or two then I walked a ways to get the kids from school – did some homework with my daughter and am now laying again… yeah there is a little burn here and there maybe a 2 on the pain scale… but I can THINK, I can PLAN…. I have ideas….
I don’t have the physical stamina to do all the things I can think about… I want to plant a garden with my daughter this weekend, I want to clear out all the dead stuff from last fall I never got to… I want to scrapbook with a friend, I want to plan my son’s birthday party and have a real one with games and kids and cake and a theme… I want to hide Easter eggs in the house for the kids to find on Easter weekend…
I can’t do the shopping or the creating of all those things in one day… BUT I can spread them over a few days and get them done….
I have ideas about a ministry that I use to be on staff for and a desire to help be a support for some of those folks… and I can again…..
I have ideas about getting the word out on SIJD… no idea what to do with any of them yet… but they are ideas that I can actually ACT ON one of these days….
It’s overwhelming at times… all the thoughts, there are so many ,and I find I keep thinking like I did before the surgery… that I have to chose because I can’t “do it all” without pain…. but that’s not true anymore…
I said this to some friends just the other day…
Entering this new phase…. I JUST talked about the fear of not really knowing what to do with myself as I enter this new phase where my body recovers and the pain recedes fast and faster…. I am toes into this phase… pinky toes but I realized it…. and as the enter world and stand on it’s horizon all of choices opened up… fear is really the only word to describe it…. the possibility of a future doing whatever I want – funny thing is … I have no idea what that is….. I know I have no need to figure that out today and that my journey of rest and meditation on working on strengthening my body is far from over. I ‘m not planning any marathons this week:) I am still very much planning on listening to my body – but the idea that there is an end – that I won’t be in Physical therapy forever… that I won’t be in pain forever… it keeps crashing into me like a tidal wave and I am thankful and scared all at the same time…..
I think that sums it up my emotional/spiritual state well.
I have also gained 10-15 pounds since the surgery… ( I lost 5-7 early on. The synthetic heroine diet I called it)
I WILL lose it – I am just over the “normal” for my height by a few lbs… less than 5. but I decided I am going to look at this like pregnancy weight… I have just given birth to a new body – I didn’t put it all on overnight and I am not going to make myself too insane trying to take it off overnight. I know my eating habits have been less than steller – I crave sweets and carbs and drink coffee not water. It’s a cycle and I know it. I lost 35 lbs a few years ago by JUST adjusting my diet and limiting calories… I have committed to reintroduce 60 oz of water a day back into my life and once I get that on a regular basis I’ll deal with some of the other poor choices ( like not eating breakfast) and just keep adding smart things back into my life.
I have no system, no rhythm for life anymore…. I am literally rebuilding it…. As much grace as I have given myself with my body… I feel I MUST do the same with figuring out how to Really LIVE in my life.
13 weeks 1 day
Just had a tear inducing conversation with my 10 year old son.
I went into his bed room to cuddle up with him like I use to before the SIJD got so bad that I was in bed at 4:00 as soon as my husband got home…. they would come in and say good night since it hurt to much to walk and bend over…
I crawled in with him and we just started talking about stuff…
After a few minutes he said,” Mom you better get back to your room, I don’t want you to hurt more.”
Me: But honey it’s ok, I can do this now and it doesn’t hurt.”
Him: I can see your getting better…. you do the stairs more, you walk the dog, you are downstairs with us more and not always in your room…. you laugh more and don’t look as sad all the time… and you haven’t fallen down once since the surgery….. well ok you dropped that pot lid on your foot yesterday, but that didn’t scare me.”
Me: It use to scare you….
Him: yeah, you’d fall down and my tummy would get all tight- and then you’d be in so much pain…. I’m glad that doesn’t happen any more….
You use to look sad or angry sometimes…. I really think it was just because you wanted to do more with us and you couldn’t.. but we love you Mom, it’s ok.”
I hugged him tight and thanked him for loving me as I am and reminded him that there is a lot more to come and I will continue to get better and stronger and do more and more. He just nodded and said, I know – that surgery fixed you – and your PT too!! Then he started talking about Harry potter and legos, as tears crept out of my eyes….. I tucked him in and went back to my bedroom…. where the impact of his words hit like a tidal wave…..
I didn’t realize how much the pain and dysfunction had taken over all our lives…. how scared it made my son, how helpless he felt when I would collapse to the ground under my own weight in pain. I didn’t even realize it happened enough for him to notice. I didn’t realize that pain had carved a spot on my face…. I am thankful that in spite of ALL that, my kids think of me as happy and loving and caring…. but to hear my life through his eyes…. it hurt and it healed a little too……
Something about having a ten year old that can reach into your soul and pull out truth… that’s powerful stuff…..
13 weeks 2 day
Forgot to mention my other moment of abject horror yesterday… I was taking a shower and was able to shave my legs standing up for the first time since….. Wait…. ok ,I really don’t remember how long it has been since I have been able to single leg stand…..
So I put my leg up on the little seat that is molded into the shower and SNAP – this HUGE HUGE HUGE Snapping sound followed by what I can only describe as my pelvis shifting…… I froze…..
Did I just rip the screws from my bone… did I SNAP THEM….. DID I tear something new?! OH LORD what the heck just happened…. I put the leg down and….. nothing…. no pain no nothing… My mantra over odd feelings and catches and snaps is basically – “It’s normal, it’s your body healing, things are readjusting, your getting stronger, these muscles are being newly awakened, stop freakin’ out…. the surgery didn’t fail, my PT isn’t worried… I should only worry if my PT is worried” stuff like that….
I am usually greeted with a “How’s Amy today” when I walk into PT (it’s his opening line to the vast majority of his patients. My answer yesterday was, ” freaking out a little” told him about the snap and the crashing pelvis feeling…..he smiled and said, probably just a tendon that’s tight no reason to worry…. but I bet you thought you snapped the screws! ” Oh he was so so right…..
I chilled out after he told me what happened… but I didn’t want you all to think I never worry about my recovery physically, cause I do sometimes. I think were all clear that I am an emotional nut case at times.
13weeks 3 days
My lesson this weekend…. don’t stay up until 1:00 am with your girlfriends 😉
HOLY stiff and sore all morning with not enough sleep 🙁
I DID realize that I am still pretty med dependent to be as comfortable as I am. With over sleeping my normal med time everything was out of my system when I woke… it wasn’t SI bad… but it was like I backed up 3-4 weeks in healing. I am still on the anti-inflammatory and muscle relaxant and they are both still helping. I probably average 2 doses of the muscle relaxant….. I am prescribed 3…. I just forget the afternoon does and then realize things are tighter than they “should” or “need” to be. Kids are coming home from school when that mid day dose should be taken and I get busy and forget. I suppose I should see that as a good sign
13 weeks 4 days
I was chatting with one of my SIJD friends and we had a discussion on a part of recovery that I haven’t really talked too much about. I didn’t mean to exclude it… it’s just so much happens in a day and I try to hit highlights that paint a real picture of what I am going through….. but sometimes that’s hard! I don’t want to bore you guys to death either!!!
Physical body chemistry….
Over the last 5-6 years as the pain became constant and more and more disabling I found other “chemistry” issues going on.
Not surprisingly it was also close to impossible to get Dr’s to listen to me and not just put me on an anti depressant. I have no issues with that kind of treatment if your body actually NEEDS what it provides, but I just want to understand what’s wrong so we can fix the problem not just treat the symptoms of the problem, or cover my symptoms. I refused the anti-depressant and pressed on for answers.
I was in my early 30’s and starting to experience pre – menopause symptoms. I was talking with a dear friend about it and she had her own hormone journey. She sought answers to problems and was a fountain of great information for me. I went with her notes and I talked with a with a bunch of Docs…. half of which I left because they wanted to label me with Fibro because I had pain points at my neck and SI…. sigh…. well you get the idea.
I was eventually put on thyroid for sub-clinical hypothyroid, my body wasn’t making enough to keep me functioning…and bio-identical progesterone. I got my brain and energy level back – it was great… all that was left was the pain in the SI and occasionally in the neck where the herniations are….
I have always wondered if these things came on as a result of chronic pain…. I mean the body is in a constant panic mode sending out cortisol and adrenalin to keep our bodies going…. this does cause hormonal issues as well as fatigue of those glands! I have not looked into that as much as I have the biomechanics of SIJD – but I believe they are connected.
I say all that to say – in my recovery, I have found myself in withdrawals of my body’s own bath in adrenalin and probably cortisol…. I see this present itself when I feel the need to pick a fight with my hubby or my kids – or just want to be mad at someone – the dog will do…. it’s like something inside me says – YOU NEED to be mad, you NEED to fight -” we” NEED the rush. It’s too calm….
For anyone that has experienced healing from any other long term crisis, emotional, mental, physical….. It’s much like that. It’s not unusual, and since I do have some other emotional traumas in my past that I have healed from. I recognized, “the need to fight” as a side affect of healing….
It reminds me that I need to mourn the losses SIJD brought to my life, and that my body really has been through a war. I hope that someday I might be able to regulate all those hormones on my own and get off the meds…. that’s a long way down the road, I need to get rid of the need for muscle relaxants and anti inflammatory first 😉 So while your healing don’t be surprised by what friends and family and possibly even you, will see as random emotional outbursts…. they aren’t… it’s just you healing from the war your body has been though in it’s quest to find stability.
13 weeks 6 days
So the days continue to roll on after surgery, and I keep making these little observations and they seem so small, but I think they are signs of tremendous hope, so I thought I’d share a few.
Friday I went on a girls night out at a friend’s house. A few highlights:
1. I was out from 6:30-12:30pm… sitting talking about anything and everything… no pain pills, no Tylenol, no tens, no ice…. just me and the girls – it was wonderful to be able to focus on what THEY were saying and not thinking about how I was going to pay for this or should really go home.
2. At around 10:00 my husband called my cell afraid that I was hurting and should come home…. he wanted to know if I needed him to pick me up. (a friend of mine drove me.) I said no, I was fine… but I was annoyed with him…. I realize that’s wrong… he was being sweet, caring, loving; wanting to make sure I was ok. But really for the first time that I can remember I really was fine… I went to bed a little sore and woke up fine…. how do you NOT get excited about that?!
3. One of my friends had a almost 5 month old baby with her… I saw her walk in with the baby and thought to myself… oh my God I didn’t even remember she was pregnant and now she has a 5 month old…. I almost cried… I had seen her in the fall, I was told… but I don’t REMEMBER… all the pain meds, and the fear and the pain! It also showed me how long it had been since I had really been able to go on Girls nights out…. we only do them one a month…. It was heart breaking to SEE the time that was lost battling SIJD, fearful and undecided AND doped up to survive.
Today I don’t feel well. My throat hurts. I have sinus drainage and my throat is raw and you know what. THAT is the pain that is most intense in my body today. NO, really a little sore throat has more of my attention than the pain in my muscles. HOW fantastic is that! I can’t remember the last time being sick was “painful”.
I needed to get some lunch and a few Easter surprises for the kids so I went to the store. Over the last few days I have noticed that I don’t freak out about parking. I use to hate having to park more than a few spaces from the door… I wasn’t sure I would get the cart back to the car… it was so planned out, so careful, so limiting… I never applied for a handicap sticker, though I wish I had looking back…. but today, I just pulled into an open space an went to the store, then I came back out. It was so normal…. it was so normal that I teared up.
I am really getting my life back…. I really am.