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week 14-15

14 weeks

Today I was up from 8am until 5 :00pm – with NO increased pain…. that’s 9 hours… 9 hours of being normal… of being a regular person who just was… I can barely take that in…. it’s big… it’s really really big…

8:00-9:40 got up, dressed, nagged kids to get dressed and eat breakfast – cleaned up kitchen counter, helped kids feed the “zoo” we have that lives here…. put some stuff in the dishwasher… got kids in car and we all went to PT.

10-11:30 – PT

My PT has a student shadowing him for more weeks… Tuesday we gave him a big here is what SIJD is… learn it, it’s real… it hurts… and it sucks… lesson.

Today I KNEW I was getting better… While we were stretching my PT asked if the student could “feel what’s going on with your piriformis” my heart raced, my palms got sweaty…. why was this man I trusted willing to turn me over to this.. this… KID?! Has he lost his mind… is he INSANE…. we had one of those conversations you have with a close friend, you know where you speak with no words, just looks…. at the end of the silent conversation I said,” ok, he can try”…. I was totally conflicted between wanting this guy to understand how awful this is and not wanting ANY newbie or ANYONE else to touch me! Ugh talk about your trust moments…

My PT shows him how to stretch and what to feel for… newbie PUSHED down on my knee – stretching and taxing all the SI ligaments- it didn’t hurt this time, but years of experiencing pain with something like that made me YELL – “DON”T PUSH DOWN!” It came out really forceful… I didn’t mean it too, but Never, never push down…….. Then I apologized…. My PT repeated… Don’t push down… (Insert a bunch of pt words abduction eternal rotation. ect) Newbie tries again…. soooo not in the right place… he says,” I think I feel it”… I say no…. more this way…. he did listen and finally found the start of the resistance. I ask if he wants to try to find it again… it’s a horribly awkward and rough experience… he can’t find the right position… he offers too much resistance…. he’s like a gorilla! Too rough… My pt takes my leg back and show him again… it’s like a fluid dance… it’s gentle, it’s delicate.

In that moment I found EVEN more appreciation for my PT, if that’s possible! The newbie Gorilla gets a go at my good side and feels the difference – something tells me I’m going to have to let him try again next week… but the best part…. my PT knows he was ineffective on the “bad” side – goes back and redoes it…. anyone who tries to convince any of you that all PT’s are the same – NO WAY. Interview them and TRY THEM OUT before you commit.

I am more thankful than ever for my PT today.

We did 20ish minutes of standing resistance exercises and some more laying ab work. It was a good day.

After PT I went to the pet store with my daughter and picked up a fish she has been wanting and then off to grab McDonalds to grab lunch for my kids and our play date that was meeting us at the house.

12:00- 3:00 play date for the kids while the moms sat and talked – wonderful!

3-4 little more clean up around the house, computer time, scrapbooking

4-5 – outside with the kids helping plant more things in the garden

5-7:00 laid down

7-7:30 WENT TO GROCERY STORE! No really I did! Short trip needed something to make cookies tomorrow with the kids.

Came home ate dinner and went back upstairs to write this. At the end of the day I am tired, but so proud and so happy… my obliques are sore from PT and trying to keep my posture right….

I couldn’t do a full day like that again tomorrow, but I did it today and THAT is amazing.

It’s been such a horrible long painful and isolating road for so many years. So much denial, so much life lost… so so so much fear and desperation. So much I didn’t recognize… it’s amazing to have days like this… I never thought I would have them again. I really didn’t. It’s such a different perspective looking at it all from here….

I was talking to “newbie” about pain at PT…. I was trying to explain that as a patient IN chronic pain, I didn’t have the right perspective on what pain is… or how to communicate about it. My PT was trying to explain all the stuff we did wrong. I could hear how sorry he was, but I didn’t know either…. we talked about the dreaded bridges and my PT was recalling having me do single leg bridges prior to the surgery and saying it was just the wrong treatment plan. I stepped in and said yeah but you kept asking if I was ok… was I in pain…. I kept telling you NO- because compared to how I normally felt it really wasn’t that bad… it was hard…. and it hurt but it didn’t hurt as much as the SI stuff. I thought maybe I was just being a baby…. that it was “growing pain”. I tried to explain how I didn’t KNOW to tell him it did hurt…. I hated those bridges… NOW I know what hurts and when to say so before it does damage…. but I have no idea how you learn that as a professional unless your patients talk to you and you as a professional talk back….

It just had me thinking today… even as I look back and read this journal… I am in so so so much less pain now than I was right after surgery, but again – with a “skewed’ understanding of pain – what I felt post surgery was so much less, but it was still pain, and a good amount of it to a normal person….

And as the pain moved out from the SI joint it was still pain – a good constant strong pain… but still so much less than the mind numbing blinding SI pain that it was hard to complain about. Even now I wonder will I look back at this phase and say,… you know even when life was becoming normal again there was still more pain than I thought?

Something tells me I just might turn around in another 4 weeks and say, yeah… that will still more pain than I am in now. But for today, I only iced down twice, and that’s pretty cool!

14 weeks 2 days

It’s Easter weekend and between Easter and Friday’s small group study on God’s goodness I am hard pressed to get this thought out of my mind.

Our study started on Friday with the question,” What is the most difficult thing in your life right now? What singular thing would you ask God to fix to make your life better?”

Your KIDDING right… I mean, you have to be kidding….

The tears start POURING down my face… I really don’t want to make a scene in the middle of small group in my living room, but it’s just like God is talking TO ME right now. Seriously, what singular thing have I asked God to FIX…. MY SI JOINT…

A few things in this moment overwhelm me: The first is HE HEARD ME AND HE ANSWERED!!!!!!!!!!!! Gratitude mixed with frustration… WHY did it take Him so long to PROVIDE the answer…. Please don’t miss understand me, I am eternally grateful that God has provided an answer to what felt like a totally impossible situation. But I would be remiss if I didn’t add that it is a sticking point that it took so long and that I was SO horribly broken before the answer came…

And then I stopped sobbing long enough to hear the next part of the video…

“God’s goodness, doesn’t always match what we think is good. But He has provided you with the kindest answer possible to bring this about…

God brings about the best possible ends – what looks like an eventual complete recovery by the best possible means- with the gifts of my small group, and the skills of the team in GA for the most possible people – those of you that have been encouraged by this journal for the longest possible time….”

It was like I was being told that my suffering was not in vain all these years because it could be used to help others. I have always said suffering sucks, but it’s always better when we can use our own suffering stories to show others how to get to the other side….

I think about Jesus, maybe you believe in Him, maybe you don’t… but bear with me….

Good Friday is good because you can’t have a resurrection with out a death. That resonates with me more than ever this Easter as I think about all that had died in my life due to SIJD…. and how it is being redeemed and resurrected in this healing process.

Keep Fighting

Keeping Hoping

NEVER GIVE UP – answers are out there for all of us.

14 weeks 3 days

I know in the last 14 weeks I have heard God loud and clear on some things that I needed:

1. I can take anything you give me, no matter how small and use it- it’s not about you, Amy; It’s about me….

2. You are a human being not a human doing… your worth does not come from what you do, who you interact with, or how much you are able to accomplish – it comes from being my child, you have value because I give it to you.

3. Your brokenness has grown others.

4. Your brokenness (emotionally as well as physically) has made you rely in me; in your weakness I am strong.

5. I love you – I love you – I love you…

I feel weird this afternoon. I woke up feeling weak on my left side – from waist down to the bottom of my bottom…. I chose to ignore it this morning and see if it would go away.

… I went to Church for the first time since surgery, it was wonderful and lovely and I cried the whole time. I knew that I was not feeling as strong physically as I have for the last few days, but I really wanted to go. It was wonderful to sit through the whole service and not be unbearably uncomfortable. We do stand and sing for quiet awhile at the start of service so I opted to sit and sing my heart out.

We got home and I just felt like it would be a better idea to sit and rest, so I did, but it felt funny – weak, uncomfortable, maybe painful… mostly like the muscles just won’t/can’t do their job today. I worked on abs and lumbar last night and I felt great… all I can think is I taxed things too far.

Is this weird feeling the new,” I pushed too far?” It’s accompanied by an emotionally weary feeling and I am trying to be cautious and listen to my body for a change. I am back in bed resting with the tens unit on. I wonder if I am being too cautious…. somehow I don’t think so. Is this pain and it’s just so little in comparison that I don’t recognize it AS pain? Just seems too little to rest for, and yet I really want to have learned my lesson on pushing through pain and how that doesn’t do me any good!

14 weeks 5 days

It is pouring down rain here today! BUCKETS AND BUCKETS worth right now, I’m laying on my tummy in bed all snuggled in after PT this morning. Glad to be doing a whole lot of nothing 🙂

Ok, I KNOW that every Tuesday is like this revelation and reassurance of everything that felt weird over the weekend and I know I talk about my PT all the time, but I am afraid you will need to indulge me again….

As I mentioned this weekend I had this weird sensation in the left side… kinda lower back, kinda side of hip, kinda front of hip… it felt weak, inflamed, and tight…. this morning it was pain. I have been icing, heating, tylenoling, stretching…. stayed off me feet more than I wanted to try to rest it…. I even went to see my massage therapist friend yesterday in hopes of calming it down so I could still make progress today in PT!

Massage was nice, addressed a bunch of other knots, but not this feeling of weakness. I was slightly concerned about it in my head – mostly because I couldn’t figure out what caused it… or really identify what was hurting. Not the piriformis, not the lower lumbar… I decided that I was not going to freak out completely- though I kinda wanted to and if it still hurt when I got to PT I’d simply talk with my PT about it.

So I let him know what’s going on and showed him where it hurts… told him Tylenol didn’t really cut it, neither did ice or heart and the tens unit make it better but only while it was on. He checks out the “damage” and then I asked for his theory on the situation.

I love that he laughs with me about these things – we laugh a lot in PT- but he basically tells me that this is really fantastic news and that I should be encouraged because all that I am feeling is over used glutes. Most likely the reason I feel this is because I am taking longer strides when I walk – not my short shuffly SI pain steps… I’m walking like a person not in pain… AND since the piriformis was still “remaining quiet” the muscles that are SUPPOSE to work ARE ACTUALLY WORKING!

See this is what I adore about the man – I go in there thinking I’ve done something wrong and now I am in pain because of it and he turns my fear on its head and says NO this is great! Your body is working right and your just taxing weak muscles…

I see another part of this process of recovery: learning to trust my own body… it’s failed me for so long I am so unsure and timid when sensations change – good or bad… I try hard not to focus on it all the time, but I do notice that it does take up a good portion of my thoughts. Education helps me – asking endless questions and understanding what is happening inside. I feel like I was in the dark for so long that now I want as much information as I can possible absorb.

If I had to sum up the journey and where I have seen the pain travel so far through this recovery it’s as follows:

1. Biggest pain = surgery sites

2. after 2-3 weeks in bed everything felt great because I wasn’t using anything

3. piriformis pain

4. piri and low back

5. piri and far outside of butt

6. hip abductors and some piri – neck

( I have herniated disks in my neck so I will also have to restrengthen all those muscles back up to keep that from hurting… I knew it would be part of the recovery for me.

7. HIP ABDUCTORS and groin

8. groin and smaller glutes

Carol has said this on multiple occasions and I totally agree with her – it’s like it heals from the SI joint outward.

My abs still need lots of work, I have been far stronger than this in the past… but the laying around to keep other stuff from flaring up IS a challenge… I no longer question why it takes so long to heal.

For those interested in the run down on what PT looks like these days here is what I can remember of what we did today…

Bilateral massage and ultrasound of inflammation ( we haven’t used ultrasound in a while. Stretching with isometric contractions of inflamed muscles, – Honestly my favorite part of the whole thing the stretches feel so good and then when he makes me push he gets a better stretch out of me…I’d do those all day if he would let me!

Lunges! Lunges to the front and at a45 degree angle – this might be a bad name for them – stepping to the front side and back and bending forward over one knee NOT deep like a “real” lunge.

Single leg standing and you bend at the waist and touch the floor… or pick up cups 🙂 single leg standing eyes closed other foot a few inches off the ground and does circles – I got to hold a hand for some balance – when he let go I wobbled all over the place. Laid on a table with support to belt line and feet on the floor knees bent – lift heels off the ground – just another way to stabilize core and glutes resistance around the knees and push out with the hip abductors. Same deal on the table but until my sits bones were on the table then did a hamstring stretch that ALSO stretched something in the front that was super tight…. it was at that moment I looked at him and said – I sooo wish I could hear what’s going on in your head… I can SEE you trying to figure out how to stretch/strengthen something. All I got was affirmation… yes yes I am :).

Then we did dog points and cobra advanced bridges – ball under the legs ,my arms were on the table, but over my head – he said this extends all the ab muscles so I have to use the lower ones to bridge and not just the ones in the middle which are the strongest… never ceases to amaze me the infinite ways he seems to be able to modify things to get JUST the right muscles to engage. Straight leg raises – arms still above my head – then again with him supporting the opposite foot – so no feet or legs are touching the table – that’s HARD work!!! Then I started shaking like a leaf and we were done. Ice and then home. I did stop on a whim at a near by thrift store and got BRAND NEW competition type bathing suits for 4.00 each – since they usually run 75.00 plus I was VERY excited 😉

pm

Once again the run over by a bus feeling has wiped me out…. I am emotionally ok about that today – I have learned that it is part of the up and down of the whole thing but I think it bears mentioning.

I have been in bed all day… on ice, tens, even took a pain killer. Tried Tylenol and the burn, tightness, was just too much. I figure I have a ton of pain killers left over, I think this is the 3rd one I have taken since I got “off” them after surgery… why be in pain when I don’t HAVE to. I saw it as trying to take care of ME. I didn’t do more. I took a nap and I am waiting it out.

It’s like 9 hours since PT and the total exhaustion and inability to move is gone. I think… Tomorrow morning will be a much better judge of what’s going on.

It’s been awhile since anything hurt this intensely and as you can see it kinda creeped up on me since Saturday. It would be easy to give up, and give in, to say I am ready to LIVE all the time and blow off what my body is telling me. It would also be easy to give in to what feels at times like failure and frustration.

I feel beyond fortunate that I have a family and PT that support me and that I don’t have to try and juggle a job… I can see how NOT having any one of those things would make this journey harder.

Even with all the support I have here, having friends here that HAVE lived this life of frustration…. that is impossible to explain how helpful that is. Seriously – It allows me to live in a life with people that are “normal” but it also allows me a safe place where it’s ok to have good days and bad days.

15 weeks

 

Making butterbeer for my son’s 10th birthday!

Getting ready for my son’s birthday party and defiantly not feeling as good as I did last week. I put together his goodie bags while lying here in the bedroom. I am glad we made it for Sunday… it gives me a few more days to get stuff ready. I wish that it didn’t take this much planning to pull off a simple birthday party, but as a dear friend of mine says, ” it is what it is”. Emotionally I’m ok with where I am at, but I’d be lying if I didn’t say I look forward to more good days!!!!

The PT work is wiping me out physically. I am happy to focus on it, but it’s tiring. I have gained enough strength back that I need to REALLY REALLY focus to make sure I am strengthening the right things. If I am not intentional in my movements it is far too easy to just use whatever muscles are available – and they are usually not the right ones 😉 I really do believe the PT work is important – especially for those of us that have been living with this dysfunction for years and years. Weather your doing it on your own, or with a PT, paying attention to what your doing is important. I actually find it more challenging now to make sure I am working the right muscles than I did at the star. At the start NOTHING had any strength so there was nothing TO recruit 🙂

Good day of PT stuff – more new stretches – I am still feeling the burn/discomfort up in the smaller glutes at the top of the rear end. My left side feels particularly weak, which is not the usual. We taped me up again with the kineso tape to help support the glutes. I can really appreciate a difference when we do that. It doesn’t burn as bad, and it feels like the inflammation goes down a bit.

For those that are curious here’s the website: http://www.kinesiotaping.com/kinesio/method.html

Rest is still the order of the day for me. I am not in bed the whole day. I can still get to the store for shorter trips and I can do a few household type things, put away laundry, and fill a dishwasher. So it’s not total bed rest, but as soon as I feel any increase in pain or change in the way I am walking I head for the hills and rest.

Having had so many great days in a row I noticed how much more energy I had and how easy life was. The more pain I am in the harder it is to focus, to think, to multitask…. I know that’s not rocket science, but when you live like that all the time you forget that it ever felt any different. Now that I have experienced life without pain, the pain days are harder, it’s like I am walking and hearing through honey.

I keep letting those good days fool me a little, that maybe I am close to done, then I am reminded while 15 weeks seems a life time ago and I have made it SO far and gained so much of my life back but I do have so far to go. I feel like I get really excited about where I am at on a good stretch and I think that “normal” is within reach… and then I have a few days like this and I feel like it’s a million years away. It doesn’t flatten me emotionally like it did earlier on, but it is a reminder that nothing about this is quick 🙂

I find it’s getting harder to tell friends how I am doing…. I was out getting the mail the other day and my friend and neighbor (we’ve been dear friends for 18 years) looked at me and said – so why aren’t you better yet?! You had surgery a million years ago. I just looked at him smiled and said, yeah, it was a million years ago, but they told me it would take 2 million to recover ;). He just wants me to be better, but it gets hard answering peoples inquiries. I want to just BE. I feel a little guilty when I say I am good but I have a lot of work to do to be great…. I have good days and bad days, is another answer I give. I don’t know why, but I feel like they don’t REALLY want to know. I mean who wants to hear about muscle imbalances and medical theory about the SI joint…. BUT I also don’t want to lie or cover up that life still isn’t easy all the time yet.

15 week… not where I was… but not finished yet either 😀

…and with that I need to go make dinner, cause I CAN 😀

15 weeks 1 day

I was looking at all the crab apple trees that are starting to bloom around here and thought THAT”S what I

Though I am really hoping for a good day tomorrow so I can get some more of this B-day stuff done! A few friends have said they will come over and lend a hand on Sat getting things cleaned up- I am SOOOO thankful for that! Plus we need someone to taste the butterbeer 🙂 I am even thinking of forgoing the muscle relaxant to have some “adult” butterbeer!

I need to make it to the mall, party store and a grocery store tomorrow… I think I can manage that. Then I have a few cutsie ideas that I can do sitting or lying down if I have too. Most likely lying down…

15 weeks 3 days

What a weekend! It’s Sunday night and I am pooped! We had a crazy last few days around here. Thursday Ben’s back “went out” and he couldn’t move he was in so much pain. I pulled out a brunch of my tricks, heat, ice, meds, ect ect… nothing was helping – just laying still… Fri he woke up and couldn’t get to work… I called my PT and asked him to fit Ben in. He was gracious enough to do so. After his eval with my hubby he said it was most likely a disk that’s not happy. Now mind you my hubby hobbled in as bad as an SI patient on a good day, but he was in terrible pain. He was given a few exercises to do 3-4 times a day… by Sat morning he was FINE…. I was thrilled AND irritated. Really 45 minutes with my PT a few little extension exercises and you go from hobbling on one leg and not being able to sit, to being fine! If that’s not a magic wand I don’t know what is! He did say some of the sweetest words to me the other night. I got a glimpse of how hard it must have been for him all these years not really being able to stop my pain or help me much physically… but he experienced my life for a little over a day and he said, ” I don’t know how you did it all those years, in pain like that, it just shows that what I believe about you is true, you are the strongest woman I know, and I am so sorry you ever had to feel pain like that and worse.” priceless – and a soothing balm to my soul.

It was Very hard not to have any adults in the house that were functional, especially because last week was such a better week for me. I am still burning in those smaller glutes – its bending and leaning I think… but yeah… I rest and ice and do all I am suppose to and I don’t’ get better over night. It’s petty, I realize this – but oooooooooooooo, I just wish it were that easy for me.

I called out to friends to help clean up the house and get ready for the party – they were wonderful. I just have to mention that each one of them thanked ME for telling them what I needed so they could help….

It really made me think… I sent an email saying I really wanted to get the lawn mowed, the main floor cleaned, and needed help making some stuff for the B-day party.

One friend came for 45 minutes and helped pick up the back yard,

Another friend came with her husband with all 3 of their kids and BLITZED the house – inside and out. Like an hour and a half and the whole thing was clean and mowed AND weed wacked!

Another friend cam and helped finish up the party details.

Because of all that help I was able to enjoy the whole party today, take pictures, and just BE present for my son on his special day.

And one of my dear friends stayed during the party and helped clean up so I could lay down after….

Each one of them THANKED me for telling them what I needed, how they could help.

I know so often we feel so alone and so isolated – so desperate, so vulnerable and so raw. I know most of our friends and loved ones really don’t understand the hell we live in or the pain we feel- but I do think some of them want to help, they just don’t know how. Maybe, just maybe if we ask someone will respond. Just a thought, but I know I am touched yet again by the willingness of the people in my life to help me along this road.

Being able to plan, execute, and participate in my son’s Harry Potter Birthday party… TOTALLY worth all of the things that have gone on to get here.

I am beat from this week – and pushed too hard – and my hips hurt and my muscles still yell out, I didn’t go for my swim, I figured it would be too much stress on my body this week. But I am looking forward to where next week takes me – lets hope it’s forward with a little less burn!


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