Just Psoas We're Clear...

…I'm not out of the woods.

Not at all.

It's rearing it's ugly head again, and I'm nearly in a tailspin.

Two days ago we were celebrating Christmas with my family-in-law. It was a wonderful day with the two new kiddos in the family. We were exchanging gifts and I was sitting on the floor with Josh, getting ready to help him open some gifts. There was nothing of any value to note really…I wasn't sitting in a strange position, or jerking about in any particular way. It just, all of a sudden happened. My psoas tensed up and tweaked. It began to ache and throb, just like it used to do right before it would spasm. I felt my face go white, and I know Matt sensed my panic because he kept asking me what was wrong and saying to sit on the couch and relax.

It never ended up actually spasming, and by the end of the night I had almost completely forgotten about it. I took some ibuprofen before bed, and made sure not to sleep on my right side at all. I woke up yesterday and felt much better.

But then this morning, as I crawled out of our big easy chair (the same chair I was in the first time I ever had a psoas spasm…apparently I don't learn lessons well. This was, to say the least, a "teachable moment."), the psoas tensed up and throbbed/ached again. This time it was to the point where I was afraid to stand up straight, because that was always the spasm trigger the last time this was an issue. I immediately took some ibuprofen and put some heat on it. It's about three hours later and it feels a lot better now.

But the thing is…now it's out there. Now it's a worry again. Something I will constantly be paranoid about. What if it happens while I'm alone with Josh? I don't want to be dramatic, but I hate the thought of it happening while I'm taking care of him. Now I'm so careful when lifting him, extra cautious not to move or bend oddly. It's disheartening, to feel like this will always be a wet blanket hanging over me.

When I first started drafting this entry, I wrote the first line as: "I'm not out of the woods, yet." After a while I realized that my condition may not be conducive to the use of "yet" in that statement. I am starting to think that I will never truly be out of the woods with this "recovery." Can I even call it a recovery after four years? I guess so…

Anyway, it's a harsh realization, when you go from carefree back to concern in the blink of an eye.

Matt and I keep trying to say that we have to cut my hip a bit of slack here, considering my body has changed SO MUCH in a year and a half. I've gone from 126 pounds pre-pregnancy, to 173 pounds in nine months; and then from 173 pounds to 111 pounds in the next eight months. That's a CRAZY amount of change for my body. I'm hoping that I can just start doing some daily stretches and just be a little more cognizant of it, and maybe it won't end up being an issue at all.

I will keep you posted. I'm hoping this is just a quick bump in the road.

Oh Baby!

Hi!
Oh my. I'm a terrible blogger and I apologize. I've been a bit busy, you know…having a baby and all!

We've welcomed JM! He was born April 17, weighing 7 lbs 7 oz. A perfectly healthy and happy, beautiful gift from above. To say Matt and I are over the moon is just a bit of an understatement. He is the best thing that has ever happened to us and we are so in love!

He's just about 8 months old now. He's kind of saying "Mama," he's trying really hard to crawl, and he's got two teeth coming in on the bottom! He is just the bees knees. :)

I could go on forever about what it's been like to be a mom, but honestly I feel like this first post back into this blog after such a long absence should be short and sweet for you guys. Just to get you up to date on the most important stuff, so I don't overwhelm you with a 4329473 page long post about mom-hood.

As far as the end of my pregnancy, and my delivery goes, I really had a pretty great experience. I think a lot of women hip-y's who hope to start family's worry a lot about how our hips will impact our pregnancies and deliveries.

I have to tell you that having RPAO made ALL the difference in my pregnancy. I had very little pain, if any, on my right side. I gained about 50 pounds and honestly, I hardly had much pain at all. I mostly just felt heavy and achy. But I'm sure all women feel that way at the end of a pregnancy. The majority of the pain and discomfort that I felt was in my left side sciatic, and some general left side hip pain. To remind you all, I still have impingement on that side, so there's some lingering pain there. Nothing that I feel needs to be addressed, though. The only thing I really felt on my right side was occasional weakness.

As far as delivery goes, my hip surgeon, OB/GYN, husband and I all had conversations about how to approach delivering this baby. Matt's main concern (and rightfully so) was me re-injuring my hip during delivery and not being healthy to enjoy my new baby. We also worried about me being injured and poor Matt having to take care of me and help with the new baby. I worried about these thing, a lot. I reached out to other women who delivered vaginally and heard good success stories, however I also heard women talking about not being able to get the baby through the birth canal. Some even told me they re-tore their labrum while pushing. It took a lot of time to think and deliberate, but everyone pretty much came to the conclusion that a scheduled caesarian was the way to go.

I'm going to get real for a second, because I know you other hip-y's can understand. Do you know what I feared most? I feared being injured during delivery and falling back into that depressing feeling of helplessness that we can sometimes get in to. Only people with chronic pain can really understand what I'm talking about when I say this. But I honestly worried so much that I would tear a labrum, or something even worse, and I would have this new baby that I wouldn't be able to bring myself to enjoy because I would be consumed by the thoughts of another surgery and recovery. Or worse, the thought that maybe I did something that wasn't able to be fixed. Those feelings of pain and constant exhaustion and helplessness? I couldn't bear the thought of having those emotions with my first new baby in my arms.

So we chose caesarian. And you know what? I am SO GLAD that I did. In comparison to my PAO, it was EASY-PEASY. There was some pain, but the surgery and recovery was seriously so easy and smooth.

I just want to say for a sec: I am not insinuating that a c-section is not serious business. I don't want to offend anyone who's had a c-section and felt it extremely difficult. It's major abdominal surgery and it is not anything to mess with. I am just telling you that for me, since it was my fourth surgery in four years, it was a pretty easy recovery.

I have so many other things I want to say, and I promise to say them all at some point. But for now I just want to get back on the horse with this blog and say "Hello!" and "I'm back!"

I can't wait to get back into a groove with this! I really missed it.

We'll talk soon,
D

Disabling the Disability

You know, it’s funny. I commuted into Boston today to work out of our corporate headquarters. I took the train, and then walked from the train station about 10 blocks/a half mile to our office. As I got ready in the morning, I knew I had to wear sneakers because of this long walk. I put my sneakers on thinking “Will I ever be able to make a decision without weighing the effects it will have on my hips?” I thought that even though I’m surgically “fixed”…I’m not really, technically, fixed. I guess that even after a surgery like this, us hippies always have to worry about the fatigue, and the arthritis damage, and all of our little dings and dents we’ve gathered along the way. While I feel great (and I really do), I think everyone can admit that we still seem to have some minor limitations. And it got me to thinking, even after having a corrective surgery, do we still carry the burden of a “disability?”

Before surgery, it look me a long time to admit that I have a disability. It seems like a word that’s meant for people who are truly worse off than I am, or was. I always felt like saying that I have a disability was me trying to make excuses for myself. As my pain progressed, everyday things got harder and harder for me. I began to face that fact that admitting that I have a disability is not making excuses, it’s accepting myself and my limitations for who I am and what they are. And that is far more important than pride. Mentally and physically, that was the hardest thing for me to admit.

Then, I settled into that definition. I came to terms with it. And, as I planned out the surgery and recovery, it really came to be a part of me and I embraced it. I knew my limitations and I could accommodate them. It was certainly a hard pill to swallow, but I felt as though the best way to deal with the situation was to face it head on. And so I did. Throughout PAO and scope recovery, I pushed myself when I needed to, and I cut myself slack when it was necessary. I lived with the hope that with every passing day, I was leaving my “disability” a little farther behind. 

As time went on, I got stronger; I became mobile and agile, and I became essentially pain free. And after a long while, I really felt great. And I still do. I feel better than I EVER have in my life. But, the reality is, I will never, ever be 100%. None of us hippies will ever truly be 100%. I just don’t think it’s possible. 

We all have our creaks and our cracks, and we have our aches and our pains (some worse than others). I have “start-up” pain in my left hip, and I still have arthritis pain in both hips most days. It’s not terrible, and it’s not constant, but it’s there. I guess my question is, we can recover from surgery, but do we ever recover from our “disability?” I was probably insatiably optimistic to think that I would wake up one day and feel like I never ever had any hip problems at all. I’m learning more and more, as time passes, that I will never truly shake myself of this feeling of being “disabled.” Even on my good days, where I am predominantly pain free, I worry about my hip. Mostly unnecessarily, for sure, but the slightest bit of worry is there.

And what’s worse is that these are the best days for me and my hips. They are great days, and I am thankful for them. I am doing things every day that I wouldn’t have been able to do effortlessly pre-surgery. However, I can’t help but have this nagging feeling in the back of my mind that it’s really kind of all downhill from here. These blue skies and tranquil waters are available for a limited time only. It’s like a ticking time bomb.  When will the other shoe drop?

Anyway, I hate to sound dramatic. It’s certainly not like I’m feeling this way every day. This morning, as I planned to wear sneakers because of the long walk, it just kind of struck me that there really is no way around these hip thoughts. And even though I feel better, I will never feel totally “normal.” I won’t ever be able to be totally carefree about my hips and how I use them. This is a fact of life for us hippies. 

However, I insist to always look at the positive. I still am thankful, every day, for the PAO surgery and my recovery. I am thankful that I can walk pain free, every day. I’m thankful for Dr. Schiller, and University Orthopedics. I’m thankful for Rhode Island Hospital and their fabulous care. I am thankful for Lepre Physical Therapy, and for Tom Almeida, who was a Godsend to me during my recovery. Truly a friend and huge supporter. I’m thankful for a one-of-a-kind husband who is irreplaceable. I (literally) could not have done all of this without him. And I’m thankful for all of my family and my friends.

I have a good life, and there’s no disability that will ever change that.

The Core of the Issue

Hello!

It’s been forever since I’ve written! As far as my hip goes, things have been really great and there hasn’t been much change. I’m still feeling great and doing really well.

I’m writing today because I’ve been going through some rather heavy family stuff, and I’m dealing with a situation that may affect my hip. 

The short version of a long story is as follows: My youngest brother, Jody, was diagnosed with Chronic Myelogenous Leukemia (CML) in late September. He's 34 and expecting his first baby in a few weeks. It's been a tough time for everybody, needless to say. However, he’s since been through intense chemotherapy, and he’s now in remission, thanks to all the amazing people at Bay State Medical Center and Dana Farber Cancer Institute (DFCI). It’s been an extremely stressful, exhausting, emotional time for all of our family. He’s in a better place now and we are all thankful for that. He’s an amazing guy, that Jody!

Unfortunately, even though he’s in remission, he’s got a tricky type of leukemia. His team at DFCI is afraid that if they don’t do something to try to cure his CML, he will relapse within a year or two. So, in order to ensure he doesn’t relapse, he needs to have a bone marrow transplant. This bone marrow transplant, if successful, will actually cure his CML. DFCI tested family members and scouted the donor list to determine the situation with possible matches. After all their research, it looks like I am the best candidate to donate bone marrow to my brother. Obviously, I am honored and thankful that I am a viable match and I will be able to help him in such an amazing way!  It’s an amazing thing, and the sense of responsibility is like nothing I’ve ever felt before. I’m just so thankful that he has a match, and that, if all is successful, he can be cured. This whole process has been so stressful, I just want the donation and transplantation to be smooth and easy for him. I feel like he deserves that! We are looking at an early April donation and transplantation process. 

I am writing this entry because this process will be a bone marrow harvest procedure. They will need to core into my pelvis and aspirate and collect the marrow from inside my pelvis. This would normally not be a big deal, however, as well documented here, my pelvis is not my strong suit. The biggest concern is that I still have my surgical screws from my RPAO in October of 2012. I’m working with my donor team at DFCI to figure out if this is a problem, and how we will address it if it is.

There are two reasons for this post:

1. I’d like to know if any other PAO’ed people have had to go through this; and 
2. I’d like to document how this affects me (if at all), for others who may have this same situation someday. (Though I hope you don’t).

A few things:

• Here are my latest x-rays:

• My donor coordinator at Dana Farber asked me specifically about my iliac crest, and if any of the screws were interfering with that area. This is where your iliac crest is located:

http://www.rst-art.com/ana-t61.jpg

• I’d also like to note that this harvest occurs on the backside of the pelvis, so I would be lying on my stomach during the procedure. I think this is important because my screw heads are all in the front of my pelvis.

• I’ve spoken with Dr. Schiller and he is perfectly fine with me going forward with this process. He said I could take new x-rays any time if Dana Farber needs a different angle to determine screw placement. He also stated that he would work his schedule around to take my screws out if that is something that Dana Farber is worried about. The recovery for screw removal is about 4-5 weeks (non-weight baring)…so that is something that we’d need to figure out sooner rather than later.

So, right now, I am in a waiting game. I have sent my latest images to my donor coordinator at DFCI who will pass them on to my DFCI clinician for analysis. I’m hoping to hear from them this week regarding their initial thoughts.

In the meantime, please pipe up if you’ve had this harvest procedure before. Even if you haven’t been PAO’d. I’d love some donor insight in general, someone who’s had pelvic surgery would be a plus, but not a prerequisite!

Thanks all, I hope you’re all well and everyone is hip-happy.

D

Moving Forward, Looking Back.

Finally! Today I finally got a respectable answer on what is going on/a plan of action.

It’s been two weeks since the MRI and while I know that Dr. S’s office is very busy…a girl needs some guidance and reassurance here and there!

I had my MRI on the morning of Friday, April 25^th. That afternoon, Hilda from Dr. S’s office called me to tell me that the preliminary report came back. The good and bad news is that the MRI was completely clean. No issues whatsoever. Which is great news, but also baffling. She said that everything on the MRI was perfectly fine in the hip area, but that I had a cyst on my right ovary and I needed to call my doctor to have that looked at. (Seriously? “You can stop worrying about one thing, but here’s another!”)

Hilda explained that this was just the preliminary report and that Dr. Schiller wanted his preferred radiologist to look at it before we decide on any plan and that they would call back. So I waited and waited to hear back about this…and I just heard today (after several check-ins and voicemails on my part)! It was a pretty aggravating two weeks....yikes. I don’t usually ever have a bad thing to say about that office…but I was really stressed about this whole situation.

Anyway, I had PT that afternoon of my MRI. I met with Val and she stretched me, massaged the muscles and asked me to go through the stretches she had given to me. I talked to her about the pain I was having after doing the stretches (the pain I described in my last post). Val said that it seems like the muscle group is just so tight and strained that it doesn’t want to relax with any amount of stretching at this point. So, we have to start with some very light, “easy-does-it” exercises. We are now doing exercises that don’t require me to work against gravity; just two different exercises with a stretch or two at night for now, until I feel like I can handle more. I haven’t been to her office since the MRI day, since she was away for a little while and my week this week has been crazy. I have another PT appointment next Friday and another the Friday after that. Dr. Schiller says he wants me to continue PT for at least a few more weeks to see if it gets any better. If it doesn’t get better than we will have to re-assess at that point.

Additionally, I’ve been to the doctor about the cyst on my ovary and my doctor is not concerned about it at all. He looked over the MRI and said it’s so tiny that he’s not sure he would have even mentioned it if he had seen it. He is fairly certain it’s a follicular cyst, which is very common. Just in case, we are doing an ultrasound on Tuesday to be sure.

As far as the actual psoas goes, it’s been doing okay. I haven’t had a real spasm in just over two weeks. The new exercises make it unhappy but I do feel like they are making it a little better. Slowly, but surely. I haven’t been doing much in the way of strenuous activity so it’s had some time to rest. Yesterday, though, I was in the field doing some heavy lifting. By the end of the field visit, I could feel the wrath of the psoas. It was really achy and tight…throbbing even, like it might want to spasm. It didn’t spasm, which is huge. By the end of the day, it had calmed down a lot and was mostly just achy. Today it feels completely fine, again…which is great. I would think that the lifting definitely isn’t great for it, but I honestly feel like once we get PT going on a regular basis we will be moving in a much better direction. Three weeks ago, I wouldn’t have even been able to lift anything heavy without some serious pain. Yesterday felt like a step in the right direction. We will have to see how the next few weeks go.

To end, I'll just say that these are the most frustrating types of issues...are they not? You and your doctor obviously know that something is wrong...but you have no physical evidence to tell you what it is, exactly. My muscles feel as hard as a rock, but the MRI shows nothing wrong at all...so what is going on!? These "let's just wait and see if you get better" courses of action are the absolute worst. I know there isn't anything better that Dr. S can do at this point in time...but I can't help but feel like we're not doing anything about it at all (even though that's not true). The patience that I harp on ALL THE TIME in regards to this recovery is seriously waning. I just want to be better and normal and done with all this! I'm a year and a half out...I shouldn't be dealing with this, seriously! 

Rant over...I promise. Lately I do feel better, so I am focusing on that. But I can't help but think about how much these spasms hurt, and how they impact my life when they happen. It's a helpless feeling when you can't move at all without severe pain. I'm in a strange limbo right now where I'm trying really hard to focus ahead and move forward...but I'm also stuck looking back on the past few weeks. What if this doesn't get completely better with PT? What if I keep getting these spasms at seemingly random times? What happens at that point? Do we go in surgically and see what's going on? Do we take out my surgical screws? What if THAT doesn't work? Will I be able to carry a little one on this psoas? Right now, I certainly don't think I could. Who wants to be super pregnant with major hip spasms that render you immobile? Not me! I don't even want them now, never mind when I'm in the middle of a pregnancy. Talk about stress. 

There's no timeline for this...and that drives me crazy. It's a waiting game...and I just have to keep being patient....

I’ll keep you posted on my PT as we move forward. Just another small roadblock, but I’ll figure my way around it!

Thanks all,

D