Strengthening

I am definitely getting stronger in PT, and my c-section pain is virtually non-existent at this point.  However, regardless of my strengthening, my glute and hip pain on my fused side is getting no long-term relief.  I feel much better immediately after my exercises, but then I have to drive or shop and the pain returns.  I am still taking lots of motrin (day) and alleve (night), along with Percocet for break-through pain once or twice a week.  After I finish my PT referral this month, I am going to ask for some new imaging if the pain is still consistent.  It's been 2 years since xrays and 3 since an MRI.  I'm sure I could go to pain management and get botox in my piriformis and maybe get something for my hip, but I don't want to do botox every three months for the rest of my life.  I want to get better.  I realize that may never be in the cards for me, but I want it anyway.  Not quite willing to accept defeat yet.  After all, I pushed and pushed until I got through with the SI pain, and now the residual, related imbalances are the only pains I have left.  Yes, they can be debilitating too, but not as much or as often as the SI pain, which was intensely crippling full time.  I'll update again once I get imaging complete. 

However, I can now say I believe that the pregnancy did not make the problem better or worse, which I am happy to live with.  I have new hip issues, but my PT thinks that's just life and aging, rather than either my fusion or my pregnancy.

Seven Weeks Post-Op

Yesterday Baby Girl was seven weeks old.  I am having aching pain in my rear, both the piriformis and gluteus medius, as usual.  My groin on the right side has a sharp pain from time to time, indicating hip involvement.  And the PT decided that my SI "flares" that I was feeling was referred pain from my low back.

That last assumption is likely correct.  The last three times I've gone in, they have put me in traction for my low back and it is oooooohhhh so nice!  And the SI "flares" have dramatically decreased. 

She has me doing one-legged bridges and side-stepping squats, the latter using a blue band around my ankles.  Actually that blue band stays with me for my clamshells and leg lifts too. This week she added in ball squats (against the wall).  Those are killer and irritate my left knee, which I strained recently, I don't know how.  I'm also doing neural flossing and some other stretches like the figure 4, pigeon stretch, and hamstring stretch.

I get discouraged because I'm so weak, and I still take so much pain medication (compared to the general population, not compared to SI victims).  However, I reminded myself today that I am only seven weeks from major surgery where I lost a great deal of blood, and I already walk 1/3 of a mile, partly uphill, as well as doing all these PT exercises.  In reality, I'm doing awesome.  Even with the new low back disc issues and new hip pain, I'm doing things now I could never have done before my surgery two years ago.

As far as medication, I'm taking naproxen every night, 800 mg ibuprofen at least once a day (sometimes twice), and an occasional Percocet for breakthrough pain (maybe twice a week). I would love it if some day I could get off the NSAIDS.  I would love to be able to get to dinnertime without pain.  I would love to be able to sit and/or stand long enough to hold a full time job again (right now the max is around 20-30 minutes without meds, maybe an hour with).  Maybe I will and maybe I won't.  But I'm taking it day by day, and today... I'm hopeful.

Better, Bit by Bit

With extensive rest, and alternating heat and ice, I am better.  Not great - I'm still dealing with SI flares and those related muscles spasming, but the abs aren't aching so much.  The hyper-sensitivity is also much better.  I start PT again on Tuesday and CAN.NOT. WAIT.  I am itching to get moving again, but have to wait until I know how to do it without hurting myself again. 

My 6-yr-old son is also starting PT for a shortened achilles, among other related things, and we'll be going together.  He's excited, so it should be fun to do together!  It may also help him understand Mommy a little more -- seeing me like that.

Sarah is growing and doing so well.  She sleeps about 8 hours at night with just one feeding half-way through.  30 minutes, typically, and we're back down for the night.  It's not as good as 8 straight hours, to be sure, but I'm so thankful that this is usually our current pattern.  She is just at one month old now.

Pulled Muscles, SI Flares

I have pulled two different abdominal muscles, and lemme tell you that hurts like heck.  For the left one I spent three days hunched over and having to push in on the spot just in order to stand.  It does make me question my c-section decision -- the fact that I've had so much trouble with this recovery, and that, at 3 1/2 weeks out, I still have so much pain.  Percocet doesn't even touch it at this point.

And BOTH my SI's are flaring up now, from time to time.  Even the fused side, which I don't understand.  I have requested the medical release and the new referral for PT, and both docs agreed, but the PT hasn't received them yet.  Being Friday afternoon, I'll have to wait all weekend and try again Monday.  And even once they receive them, it will likely be 2-4 weeks before PT can get me in.  I am in PAIN.  And I just want to enjoy my baby.  Trying to believe this is all temporary, but having lived through extensive chronic pain in the past, of course I'm getting nervous.

It's weird that I had so very little pain late in pregnancy but am fighting like crazy now trying to make it through.

Drugs

Just got out of my 2 week post partum check up. She said I'm taking too much Motrin, since I'm still taking it around the clock. She did offer me one more Rx for Percocet, God bless her. She said most people don't have much pain past the first week, and I have more because of my chronic pain issues. So she was sympathetic but also wants me to wean off the Motrin. How do you do that? I took Motrin around the clock for 3 years before I got pregnant and Tylenol around the clock after that.  But, I can tell I'm getting better every day.  My goal is to arrive at my 6 week check up and show her I still have half my Percocet left.  That's my goal.  Whether I reach it is another story.

She's here!

Sorry it's taken me so long to update the blog. Sarah arrived two weeks ago.  The c-section was beyond difficult, with a terrible reaction to the spinal which bottomed out my blood pressure and raised my heart rate to 145. Once they got that under control and started cutting, I had a 40% blood volume loss. My hemoglobin was down to 7.5.  So I had anemia to deal with, on top of post op pain and a hungry newborn. But she's worth every pain and complication.

On the SI front, my old friends piriformis and gluteus medius spasms are back. I'm sure my inactivity has a lot to do with that. When I'm able to take a percocet, that helps all my issues, but since my OB doesn't believe in giving too many pain meds, she gave me 3 1/2 days' worth of percocet for my 6 week recovery. So I've been rationing those bad boys and choosing to hug ice packs instead whenever I can stand it. I'm hoping to get back into PT soon, but that depends on getting a medical release from the OB, getting a new referral from the PCM, and managing to get a few appointments in before school lets out. Else, I don't know what I'll do with my three kids 2-3 times per week during the summer. Hubs is off work for April, but he won't be able to watch my kids all summer. Somehow it will all work out, just, in my sleep-deprived fog, I don't quite see how yet.

39 weeks today

Just two more days until my scheduled c-section.  My pubic symphysis pain has been way down, and although I'm tired and have aches and pains in my ribs (from Little Girl Feet), I am amazed at how little pain I've endured here at the end.  I've gone off the muscle relaxer completely, and just now use Tylenol once or twice a day.

Piri Pain

A few days ago, I really strained my piriformis while doing laundry.  Not sure how, just by bending over the wrong way.  Thankfully, I have a support group of SIJD ladies who talked me through it, since I can't do most of my piriformis PT - it requires me to be on my back, and I just can't be on my back right now and also be able to breathe.  So the regimen was ice, TENS, tylenol, seated figure 4 stretch, and rest.  I was back to "normal" in a couple days.  My "normal" isn't perfect, but at least I could walk again.

One Big Knot

If you get the inkling, in your 37th week of pregnancy, that traveling for a few days and staying in an unfamiliar bed is a good idea, you would be wrong.  There are enough aches and pains in a normal pregnancy, then add in the maternal age of 37, piriformis spasms, and a rock hard bed you're not used to will point out every single pressure point on your body.  I didn't sleep for 3 days (except for a few naps here and there), and my body was one big knotted mess.  TENS and massaging pillows did nothing.  It made me very grouchy.  My sweet MIL bought me a Milky Way bar, knowing chocolate is medicine for all ills, and it did help my mood, lol!  I was back in my bed last night, and already on the mend, just from my beloved memory foam pillow top mattress.  Ahhhhhhh.

Will you be able to run, Mommy?

That's the question my 6-yr-old asked me today.  All he's ever known is a Mommy in pain.  And now that I'm pregnant and actually in less pain, he is wanting to know, after Baby Sarah is born, will Mommy be able to run and play with him?  "You never get to play with us," he said.  Words that cut through any mother with chronic pain.  I told him, "Probably not.  I can't make any promises, but we'll just have to see how it goes." 

Since I'm having a c-section, I will have to take time to recover from that, reassess my piriformis syndrome post-partum, and then we'll see where I am.  I told him that sometimes, a body gets hurt so badly that even with surgery to fix the problem (which it did fix the problem -- I have no nerve or joint pain), it never completely heals the way it was before (e.g., my ligament and muscle pain).  I have accepted my lot, that I will likely never be 100%.  But my lot affects my husband, my two little boys, and now my little girl.  So the best answer I can give my family is "we'll see."  That's the hardest part of this whole ordeal - wondering what my littles are missing out on because they have a broken mommy, even if I am somewhat mended.

PT for the Home Stretch

My PT gave me a few exercises for the last six weeks - all designed to help strengthen the pelvic floor and the bit of the core I have left, haha!  Kegels (three kinds), as well as standing pelvic tilts and hip slides.  Also little hip figure 8's.  Those standing ones are difficult because I place my hands on my hips to ensure I have the right posture, but I really don't have hips anymore to hold on to!

C-Section

Met with my PT today. She said the clinical studies available to her indicated there was not a greater risk with delivery one way or the other, but the consensus among the other PTs she spoke with (including two PTs who are experts in women's health) was that they recommended a c-section. The combination of my fused SI joint, PS pain and history of large babies made them all wary. Soooo, I'm not saying anything else to my OB and will just go with what we decided at our last appt: c-section at 39 weeks. That means 6 weeks from now------YIKES!!!!!

39 weeks

I finally met with my OB this morning, after sending her this letter.  Her response was that she disagreed with my assessment.  Even considering my lax ligament history, she insisted my risk for pubic symphysis (PS) diastasis (severe joint separation) was extremely low. 

However, she agreed to perform a c-section anyway, as long as I understood the risks.  At least half the risks have to do with future pregnancies, but since we decided long ago that this was our last child, that took away half the concern right there.  However, she said even if I have a c-section, that's still no guarantee of avoiding PS diastasis, since plenty of people get it without having babies.  I assured her that I understood there were no guarantees, understood the increased risk of bleeding, pain from scarring (inside and out), a longer recovery and possible injury to the bladder.  But I still want a c-section.  The idea of passing a large child through an opening where one of three joints is fused, and another of the three joints is already painful, well, that's enough to seal the deal for me.  I am the 1 in a million already, and I intend to do everything to avoid going down that road again.

I told her that while she had me open, she might as well tie my tubes.  She said she couldn't do that because I'm delivering at a Catholic hospital (which I think I knew but had forgotten).  I assured her that was no problem -- I would never ask, and certainly not insist, that anyone or any group violate their religious beliefs for the sake of my own convenience.  So we'll be discussing other options --  a tubal ligation at a later date, or (ahem) a snip for the hubs.  Either way, Sarah Elizabeth will complete our family, and I'm super excited to meet her, on or near April 2 (at 39 weeks).

30 Weeks

Aches and Pains

I've been dealing with piriformis pain again, having been inconsistent with my PT on my own.  I've requested a new PT referral because I will need to modify the exercises, not only because of my growing belly, but also because my pubic symphysis pain makes some of the exercises impossible.  I am not doing anything that exacerbates the PS problems, because I'm getting nervous about post-partum recovery in that area.

Dear Doctor...

Sorry for the letter, but I can explain myself more clearly in writing and I couldn’t wait three more weeks to discuss this with you.  When you told me that the pubic symphysis ligaments are some of the strongest in the body, that really made me think.  Because the SI ligaments are also some of the strongest in the body, and mine failed me last pregnancy.  My SI Joint Dysfunction was not due to a fall, a car accident or any kind of trauma – it was just relaxin.   Pregnancy hormones alone ruined my SI ligaments, I ended up with a hypermobile joint and excruciating pain for 3.5 years, visits to 20 specialists, fights and appeals with insurance, and ultimately ended up having a violent, brutal surgery with a year-long recovery.  And I am still not up to par.  So, unfortunately, the fact that the PS is supposed to be so strong didn’t assuage my fears.  In the general population, I’m sure that’s true.  But I’m already a part of the 0.001% of the population who needed SI fusion due to my tendency towards excessive ligament laxity.  And that’s something 2 orthos and a physical therapist have told me as well.

I’m just not willing to risk being a statistic again.  I spent 4+ years disabled and incapacitated.  Because of this, I would like to discuss scheduling a c-section.  In fact, I am concerned about diastasis from simply carrying a baby, let alone delivering one, considering my ligament history.  It’s possible I’m just being paranoid, and I realize there are risks with a c-section as well, but it’s the only decision I’ve entertained so far that doesn’t leave me anxious at this point.

I realize you don’t know me, and so have no reason to trust my judgment, but please know that I am not someone who believes everything she reads online.  I know my own body very well after what I’ve been through.  That being said, of course I have no medical degree.  Just feel like I could have one, having gone to hell and back once already.

I hand selected you as my doctor because your reputation in the community is one of being able to effectively and calmly handle high-stress/high-risk situations.  I have already found that to be true, from the way you cared for me during my appendectomy.   I didn’t want you to take this letter as a question of your judgment, but just as a clarification because I feel I may have not fully explained my laxity/ligament history.

Sent this letter today.  I'll let you know how she responds.

Birthing a Baby

My OB and I discussed my pubic symphysis (PS) issues yesterday, and she seems quite convinced that regardless of my right-sided iFuse, I will NOT tear my PS ligaments during delivery, and that even diastasis would be extremely unlikely. She is willing to explore any birthing position I want, including side-lying (her suggestion, and one I've read about on PS sites as a good one) and even on all fours. PS sites suggest all fours is the safest for the PS, but my OB said there are other risks with all fours, like tearing your urethra or even clitoris (!), which, let's be honest ladies is a horrific prospect, lol!

I was very glad to hear that she is willing to explore alternative positions, even though she doesn't place any stock in the idea that I have an increased risk of permanent damage. I tried explaining to her how many of my SI friends have had permanent or long-lasting problems with their PS, but she dismissed that... So, I am both relieved at her willingness to explore what I want, and nervous that she seems so nonchalant about the possibility of real PS damage. She was adamant "fusion or no fusion, your risk is extremely small," she said.  She said it's because the PS ligaments are some of the strongest in the body. Of course, SI ligaments are also supposed to be some of the strongest in the body, right?  And mine failed me last pregnancy resulting in a violent and brutal surgery.