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Week 8-10

8 WEEKS POST OP!!!

Can you believe it – it’s been 8 weeks already! Just got home from PT- icing and updating then most likely a nap. I am excited to share stuff from today.

I am still having tightness and some pain/tightness in the piriformis – but it has moved out to the end of the muscle near where it connects to the hip. My bottom had been on fire for so long that I really don’t know if it ever hurt out there before or not – I am fairly certain that it did – but with all that pain mixing together I couldn’t tell. Now it’s almost like I could draw lines or circles around the places that it hurts.

I heard my PT say a sweet sweet phrase today,” Aim, your getting stronger!” Music to my ears, and a great encouragement for sure!

PT started the same as it has in weeks past

heat/ultrasound/massage / stretching

Today all that needed stretching out was the piriformis, all the oblique, and thoracic tightness died down after Tuesday and as I adjusted how and what I was doing in the mornings with the kids. I tried to be very aware to not twist and bend for any reason and when I did it was MUCH more deliberate with concentration on tightening my abdominal muscles.

Today was the first time since starting PT in 2008 that he has been able to dig in deep enough to actually get at the piriformis muscle – my gluts have FINALLY relaxed!!!!!!!!!!!!!!!!! It felt really good to not be jumping off the table, or leaving permanent nail marks on the underside of the it!

I am marking that as a major victory in this recovery process- it’s an indicator for me that the muscle imbalances ARE starting to resolve like I have been told they will and that it’s a GREAT indication this will continue to happen in the months ahead. More reason to be hopeful, I like it, I like it a lot.

More of the same table work – marching has turned into straighter leg lifts to make it more challenging – abs and other muscles are involved to move a longer lever. I felt like my legs weighted about 100 lbs. It was possible to do, but took a ton of concentration, and I think I almost bit a hole in my tongue 😉

Did some whole body standing things today challenging balance and multiple muscle groups. Defiantly challenging – very challenging – not painful, but much like the start of PT when I felt like I couldn’t make my body perform the motion that was being asked of it. I noticed I am still much weaker on my right side and that when walking I tend to turn my toes in and heel out ever so slightly. PT asked me to be aware of this when I am doing at home exercises. He explained it was my body’s way of compensating for the weaker muscles in the glutes on that right side.

Also added single leg standing while making circles with the other leg – again I felt like a baby horse with those wobbly legs!!! I made it a whole 8 minutes on the treadmill at a .7 and then more piriformis stretching /stim and ice My at home has been upped to 2 times a day for everything. Most of the stuff I have been doing is once a day.

At this point in the game I find that I can tolerate being up from about 7:00 until about noon. I can wake my kids up, get dressed, have breakfast, sit at the computer, or do some short errands, T and TH go to PT, get or make lunch and put a few things away from around the house and then I am ready to rest because the pain starts to increase..

After I get the kids off to school I do my am exercises on M_W_F_ since I have PT on T and TH.

I ice after exercises with tens unit for 20ish minutes and sit or lay down

then do errands or clean up a little or go to until lunch time get lunch and then more ice and back to resting.

I’ll nap until kids get home from school and then help kids with homework, usually from upstairs in my room where I can be laying down.

On PT days I usually don’t go down for dinner as muscles are pretty darn tired still.

Non PT days I head down and eat with the family – I sometimes help prepare dinner, some times not.

Some family time then back upstairs to do my second round of PT more ice and more stim after ward.

Then bedtime for the kids, tucking them in saying good night and then time for hubby and I.

At 8 weeks I would say that I am living about as much of my life as I was before surgery – but without Nearly as much pain. I try very hard to stop when I feel fatigued so that I do not prolong all the muscle imbalances. I think it’s working. I really really do.

I have noticed that I always feel better physically and emotionally on Thursdays. I don’t know if it is how close the 2 PT visits are, or if I am overdoing it on the weekends… I really don’t know – but I always feel stronger on Thursday than I do the Tuesday before and tend to be less inflamed as well.

My PT wanted to call the PT who wrote the post-op protocol and ask her a bunch of questions – we are at the end of her 6 week protocol – I am not able to complete all the things on the sheet, which doesn’t surprise me at all. If I understood my PT correctly he is looking for a time line on when she thinks more of the inflammation will come down. Didn’t have time to talk much more about that, but I am sure he will share whatever he learns with me later and I in turn will share with you all.

Each week it gets easier to think that this is closing in on the ending chapter of 18 years of pain, fear, and doubt, while battling my sijd. Though my story will continue, I feel more an more confident that I made the right choice in having this surgery and ignoring the reams of medical personnel that feared I was making a horrible mistake. It was a hideous journey to get to that decision and at the time I made it I don’t know that I have ever been more desperate for confirmation I was making the right choice. No one could give it too me, and I know those of you reading this are thinking similar things. While I can’t tell you that you will never be in pain again – I can tell you that I am so very glad I stepped out in faith and had the surgery. I am glad I risked it all. I get that deciding on surgery is like going all in – it a gamble. But as I have walked this path for 9 weeks I really believe that we have no reason to think surgery with Vicki and Dr. Weiss is a crapshoot. It’s a safe bet. If they think you will come out ahead, I think there is every reason to trust them.

8 weeks that evening

Having an experience tonight I have had several times since surgery… it’s kinda hard to describe – it’s not physical pain, but emotionally I just feel like a frayed nerve tonight. Nothing in particular brought it on, I am about a week away from my “cycle” but it’s more than pms… I feel raw. Like I want to cry- yet I have nothing to cry about. Like there is static electricity in my ears – my face is flushed – my skin tingles. Too many sounds make me edgy… my kids kept coming into the bed room for various things, homework help, to tell me a story, to ask a question, to read a book – normally all that is fine – been doing stuff like that for several weeks, but tonight it was too much stimuli- I needed them out of the room, not pressing in on me (which really they weren’t, but it felt like it.) My sijd mentor has reminded me that prior to surgery my body was flooded with various hormones to battle the chronic pain and in a way I am going through natural chemical withdraw…

Another portion of my body ravaged by instability…. another part of me that is healing….

It’s not pleasant – I don’t like my sweet children’s voices being such an irritant to me. I adore them, I usually like nothing more than cuddling and hearing their stories, but not tonight, tonight it was all too much. It’s not pretty and it’s not flattering – I am not discouraged, but it is part of my journey and I promised I’d be honest even when it isn’t pretty.

8 weeks 1 day

That raw feeling did go away – a good night sleep certainly helped, as did taking it mostly easy today. I don’t know if I have mentioned this, but since the surgery with very few exceptions I have slept through the night with no medicine and no waking up. This alone is a gigantic improvement from before! I was able to go to small group tonight and sit with friends at the dinner table and talk. It was nice.

I’m all set to go to Chicago tomorrow. I promise I’ll say when I need to stop and I’ll let you all know how it goes. I’m more confident in this decision tan I was a week ago, but I am still scared.

8 weeks 2 days

PHEW!!!!!!!!!!!!!!!!!!! I had a 12 hour day today. I made it to Chicago and back with my friends, had a terrific time – I felt a little heavy in the pelvis about half way through the day, swollen maybe. Didn’t really have too much increased pain though my walking got slower and slower as the day moved on. I did take breaks all the time but the event was like that so it was ok and I didn’t feel like I stuck out.

By the time I got home and needed to get up the stairs I didn’t really have enough muscle strength left so it was a super slow climb and really hurt the IT bands in the front of the pelvis. I was so cold I couldn’t bear to lay on ice so I am on heat now and suppose I will have to brave it and sit on that ice pack. Well see what things are like tomorrow when I wake up 😉

 

8 weeks 4 days

ow…ow… ugh

It would seem that my body thinks it ran a marathon or something this weekend. Saturday I was up all day at the event with my friends- then yesterday I messed with my fish tank – ( read not on approved list of things to do yet.) Hubby went in to work late, this morning. I haven’t managed to get myself out of bed yet, everything is sore or tight. Butt, hamstrings, thoracic muscles, obliques, lats, even the muscles in my neck that hold my head up are sore. Lets call it head to toe. The only place that is really painful is the right piriformis… not surprising for me. Can someone just wake me up when it’s Tuesday? I’m trying to decide if food is really important enough to go downstairs for….. I think I’ll slide down them on my rear.

Note to self: while outing was fun and I am glad I went, cost was maybe a little to high at this stage in the game. Thankful for no increased pain, but maybe a half-day outing would have been a smarter stair step to recovery 🙂

Very glad I decided not to swim yesterday.

 

8 weeks 5 days

hmmmm – home from pt….

It was a damage control session from my “wild weekend of fun”.

Lesson learned from me reflecting: The harder I push the longer it’s going to take to get better.

(hindsight moment: THIS is a key lesson and I wish I had learned it better earlier- there is no sense in pushing, your body will heal when you body is rested!)

Lesson from PT: A good reminder my surgery has ended a lot of my pain. I was reminded that a year ago I would not have even been able to make it into the office after a weekend like that and that the only reason I hurt now is simply an issue of muscle strength NOT mechanical issues.

No at home exercises today or tomorrow – then I go back in on Thursday and we reevaluate. All in all I feel better post massage and stretching, but a little sad I can’t to exercises. Does that make me a little sad ?

I am feeling better as the day goes on – the soreness continues to diminish the more I rest and use tens and ice. I am thankful. My best friend is here this week, I promised her a week of sitting around in jammy pants and yoga pants, watching TV and doing very little. We are starting our adventure with last nights bachelor.

I am happy to have some company in my quiet this week 🙂

 

9 weeks

Had PT again today – things have calmed down a lot from my wild weekend 😉 Was able to do a little more strength stuff in addition to all the TLC. My PT is out of town next week so I am on my own – we both agreed that I am not going to work with anyone else while he’s out of town – PHEW! I find myself more relieved than I think I should be… It just highlights how much I distrust so many in the medical field. My PT has proven over and over again that I can trust him… I just don’t think I could put that level of trust in anyone else right now.

I will do my at home stuff once a day until the rear end calms down a bit more – I am to head to a massage therapist a couple of times while he’s gone and if I am all calmed down I can go back to 2 sets of exercises 2 times a day PLUS a 10 minute swim and a daily 5 minute walk. Adding 5 minuets at a time if that’s too easy. – LEVEL surfaces. And then there was the talk of the EMU oil. We both agreed if Vicki says it works it really doesn’t matter how insane it sounds, we will try it LOL! Once we start that I’ll let ya know how that goes 😉 Headed to lay down and watch some tv now!!!!

9 weeks 2 days

I did less this week sort of. I tried to have a normal week with my best friend and her kids. She came in to help me and to see us – we missed our annual trip to see them in January due to my surgery and that the pain had simply gotten so bad I couldn’t do the 8 hour drive this year.

We love to scrapbook together – but that means lots of sitting. I really tried to limit my time sitting and standing, but I was not as successful as I wanted to be.

I am trying very hard to listen to my body, but since last weekend there is been that low burn in the muscles that I loathe. Doing my home PT stuff makes it worse, but if I didn’t keep up with them I get weaker and have to back track. SIGH – just frustrated, I was making such good progress too. The two step forward once step back rhythm of this recovery is going to drive me crazy.

Over the next 10 days I have 3 appointments with a massage therapist that concentrated on post surgical patients – believe it or not I met her as my Starbucks barista 😉 She has since found a great place to work and I will head in to she her soon.

My best friends kids and mine – hiking with Dad while my she stayed home with me… she is really the best friend I could ever ask for!

I am really hoping that she can help put the fires out. My kids are on spring break this week – I am really worried about handling that all by myself. My kids are wonderful, but that is a lot of time to cover and to be good – I need to lay down far more often during the day than I have been. I just feel guilty I guess. I know I shouldn’t. Everyone around me is kind and supportive – it’s in my own head, the expectations I think others have of me, or what I should be doing I guess. I am just too hard on myself I think. The kids will have some play dates with other friends, but 5 whole days IS a long time;)

The walking went well Fri and Sat – we counted my walk into the school as about a 7 minute walk and then sat we went to a scrapbook store for a “long” time and counted my wandering.

I’ll have the kids walk with me today – they can take the dog… My shih Tzu, Milo, isn’t use to taking walks either so he can increase his time along with me 😉

I am taking note of the fact Rosita, a fellow SIJD sufferer that had surgery, felt much like this at about the same time and she has gotten things to calm down, so I am trying very hard to focus on the fact things will not stay feeling like this forever, it’s merely a flair up and I need to rest to let it settle down.

Sometimes my brain doesn’t want to hang on to that- it wants to say, NO this FAILED, your NEVER going to get better, this is as good as it gets, nothing will ever help, you’ll never live the life you wanted, you will always be in pain and that’s just the way it is!

I know in my heart that’s not true, just wish my heart could over ride my head on those days, ya know. This is merely a pit stop on the way to get better, but I wish it wasn’t such a bumpy ride.

9 weeks 3 days

I have been still the whole day so far – it’s 6:30 here and Tylenol did take the burn away. It still amazes me that something that use to do NOTHING for pain can wipe it all away….

I am planning a jammy reading, board game day in my room for the kids and I tomorrow so that I can keep sitting and laying to a minimum and get back on track.

9 weeks 5 days

am

Day 3 of super limited activity and I am finally starting to feel “normal ” again. The burn has stopped, as have the muscle spasms in the glutes and piri. I am still real tight in the psoas and a few other things in the front, I have a massage tonight since my PT is on vacation this week. I was able to get through my at home rounds once this am and will try again tonight right before my massage. That would be great if I can really get two rounds in.

I am B.O.R.E.D. out of my mind though – really stir crazy and can’t seem to focus on any one thing long enough to really do anything either. Kinda like spring fever… it’s hard to be so clear headed and feel so good but not be able to do much or I end up feeling bad again. This balancing act is not easy… I wish it were, but it really is a dance.

Pm

Ahhhhhhhhhhhhhhhhhhhhh just got home from my massage… she worked my neck and traps which are always knotted my glutes, piriforms, tfl, psoas and IT bands – it was glorious…

She kept saying,” oh oh honey I feel so bad for you, you must be in so much pain with your muscles all knotted up like this…” I told her actually I am hardly in any pain at all in comparison to what I felt before!” – really just all those muscles in the front of the hip and the outside of the piriformis… other than that, I feel better than I have felt in years!!!!!!!!

We talked about my surgery and what I had and she said… you know I have been having this burning pain over my SI area for awhile now… sometimes it gets hard to walk and my Dr said that I just have more space in my SI than most people….. I just kinda live with it I guess….

So we had a nice long chat about why SIJD and all that Docs don’t know and she was talking about wanting to get pregnant and so I warned her about an unstable pelvis and pregnancy and cautioned her to seek PT at this point and be SUPER aware during her pregnancy…. It was nice to be able to help her understand what was going on.

She isn’t as good as my PT, but I can hardly expect her to be. She was super at listening and when I got off the table I felt human again so THAT is something. I certainly wouldn’t mind adding in a massage once a week to the PT.

I will see her again on Thursday as my PT sips pina coladas on his vacation… no I’m not jealous or anything… wait,Yes I am!

9 weeks 6 days

ow ow ow ow… um ok I know I said the massage felt good yesterday but this morning… ummmm I WANT MY PT BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I feel like somebody hit me with a whiffle ball bat all over my back and shoulders! I drank water, I really did! Somehow I don’t think that helped enough 🙁 Maybe I need to tell her to go softer next time… Am I a massage wimp?

I do feel far better than I have since my all day outing to Chicago, but I did NOT expect to wake up feeling this rough 🙂

It’s craft day with the kids so we are making a timed trip to our local craft store and then the drive through for lunch and then home. I keep a timer in my pocket to beep when I have been walking for 30 minutes and we leave earlier if I feel all the muscles give out… It kinda feels like my muscles might just slide off my back when I hit my max.

Then round one of at home PT followed by ice and stim while the kids work on whatever treasure we bring home:)

10 weeks 2 days

Is it Tuesday yet?

I feel good – it was a successful week with the kids home on Spring break. I really was very nervous about it and afraid that I would over do it in trying to help my kids not be bored to tears, but we made it work!

They got themselves breakfast and played until about 9:30 every morning. I would stay upstairs and stretch, relax, just stay off my feet until around 9:30- 10:00. Then I’d help them clean up dishes – I loaded the top of the washer they load the bottom – so a little light clean up and around 11:00 each day we ran an errand. One day we went to craft store and walked around for 45 minutes to get crafts to do at home, another day we went to Kohl’s for some spring outfits – never really over about 45 minutes – hit a drive through for lunch and then back home where I would lay on the floor and we could play games or do our crafts. At about 2:00-3:00 I would head back upstairs to my bedroom and the kids would play video games or watch a TV show until Dad got home at 4:30ish…. Not ideal, but not horrible either.

I would use ice or tens unit as needed to keep muscle issues to a minimum. I still get some pain in the “saddle bag” area as well as low back and front of the hips when I sit or stand too long… it’s not bad, it’s an annoyance and I do want it to go away, I don’t want it to stay like this forever. I don’t think it will, but yes, it’s annoying – it feels like I constantly want to massage it to get it to relax in those areas. (Hindsight moment: After being in such INTENSE chronic pain for so many years it really becomes hard to tell, “what pain is”. In rereading this I realize that simply because my body hurt SO MUCH LESS than it did before surgery DOESN’T”T mean that it didn’t hurt during the weeks and months of my recovery. Turning around and looking back all these weeks were far more painful than I feel now; I just didn’t realize that I could feel even better than I did at that point. IT is so hard to complain or even call what I was feeling pain after the years of SI pain. So just remember pain and discomfort are normal and a very real art of this journey… it’s just never as bad as it was before the surgery!)

Emotionally I feel level this week – I didn’t do too much, but I also didn’t do NOTHING. Having the ability to be functional for 2-3 hours then rest for 2-3 hours and be active again was good for my spirit this week, it made it easier to accept that I am getting better.

I took a 15-minute walk around the block with my son today and it was COLD, but felt great! He’s only 10 but was super encouraging. “Mom, your walking really fast these days,” he told me. – 🙂 Adorable. I love him to bits. My daughter says she wants to walk with me tomorrow. I look forward to that.

I am still amazed at the amount of concentration it takes to walk “correctly” to actively tighten my stomach muscles and glutes. My legs feel like they swing so much freer when I walk, it’s easier. They glide forward; I don’t have to drag them anymore. I like that, it feels good, like progress. I never realized how much effort it took me to walk before the surgery.

At home exercises have gotten easier too…. I know that means we will up things again when my PT sees me Tuesday. I am excited to see what we do next, but I also know that comes with increased discomfort.

I still feel like my pelvis tips forward… not from being out of alignment, but from the pull of the dysfunctional muscles – I feel like I have to fight with my body to stay neutral. It doesn’t worry me too much, but I should ask when I go in to PT next…. unless anyone reading this cares to shed light on it.

I find myself dreaming a lot about how to help make SIJD something that Docs know about, how to help inform the medical community on what this horrid thing is…. I pray about it a lot. I pray for you all a lot. I pray for me too.

I know that I could not have gotten to where I am in this journey without God, my family, friends, my PT, and without you all. 10 weeks ago I was terrified that I would never feel better, that I would always be broken, that my life would never be more than “I can’t”. I don’t’ think that is the case anymore…. being a realist I am not ready to proclaim myself fixed – but I am well on my way. I’d do the surgery again in heartbeat – at the very very least it helped a LOT. I wish I could stop the fear of the unknown for everyone else. I wish it didn’t have to be so hard to find answers, to find medical people that can help us… I wish it were easier…

10 weeks 4 days

I learned something new from the lovely young woman that has been massaging all my knotted up parts this week. She did my massage with Castor oil – sticky and thick – BUT she said massaged into the skin it has anti-inflammatory properties so that you’re not so sore after massage. How cool is that? I never would have known other wise – so I thought I’d share.

She also mentioned this binder deal that helps keep track of long medical dramas like ours – helps keep everything in one place as you schlepped from doc to doc…. too late for me, but I figured I’d post it and if it’s it a help to you all, fantastic!

http://megswork.com/index.php

Fwiw she really got things loosened up in the back end – physically I feel really great right now.

10 weeks 5 days

I just want to jump up and down and say – MY PT IS HOME!!!!!!!!!!! 12 days with no PT, just on my own… I have no idea how those of you without a good therapist do it!

I was so excited to get in there today that I didn’t even care that we were going to up everything I was doing and that I’ll be sore as can be in a few hours!

I got a pat on the head for being a good girl and not over doing it over spring break – and in all honesty I do feel like that was a major victory!

I know that we are past the 6-week protocol, but I have a long way to go. It might not be like this for everyone, but with me having had SIJD LITERALLY half my life – I still feel like I have a long way to go with the muscle imbalances. I still have a lot of strength and endurance to gain. I have no idea how to quantify it so I’ll as my PT what he would say about it on Thursday.

I progressed to a bunch of standing exercises today as well as a few sitting on the balance ball. I feel like I have been studying so much anatomy in the last few weeks and thinking so hard about what I am moving so I move correctly that it is easier for me to tell when I am compensating with something other than what I SHOULD be using. We started a resistance exercise were I hold a theraband in both hands stand sideways and hold the band taught while I pick up my foot closest to the band… sounds easy right, hold this and pick up your foot….. well… if I hold my breath, cross my eyes, and concentrate REALLY hard I can pick up the foot! I felt like I twisted to get more help to lift the foot up. Apparently I have some ab and glute strength, but not enough…. we did 5 and I fought like heck to do it right… it wasn’t easy. If I hadn’t thought about it, or cared HOW I got the foot up it would have been “easy” it’s doing it right that’s hard!

It was nice to get harder exercises… I feel like I have level 1 down ok… most of the at home stuff is fairly easy to do properly… but that’s the key isn’t it… doing it PROPERLY.
I am completely pain free right now as I type this and that has me very happy. I know in a few hours the burn from today will come and hopefully go by tomorrow!

Maybe I should just take some Tylenol now… I feel like I have gotten so use to not taking pain meds over the years and just letting my body hurt so I wouldn’t over do it that I still haven’t gotten out of that mind set. I guess I am still concerned that I will over do it if I don’t’ feel any pain or discomfort…


2 Responses to Week 8-10

  1. Julia

    Thank you thank you thank you for this post. This is exactly where I am at (well 11 weeks actually) from my second side iFuse (4+ months out from my right side). I’m doing exactly what you did – too much and it gets me in trouble. I’m bad at regulating. But what I truly identified with was the being totally overwhelmed at night. This happens to me about three times a week. I need to hold still in bed for a couple of hours and not be bothered. So hard on my daughter who wants to hug me and serve me, and my sweet hubby. So nice to know I’m not alone in this experience. The combo of exhausting myself and pain gets overwhelming. I want to be a full time mom, and run my business, and wife, and everything else. The idea of waiting a year for all of that is hard on my heart. Thank you for your blog and all you have shared.

  2. Karen

    This blog is a real morale booster and calms my fears ! Thank you, I am 9 weeks post op.

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