Sciatic Pain - What Gain?

Within the last week I've had two episodes of what I believe is sciatic pain.  Since I no longer have the gluteus maximus muscle, my doctors assumed that I'd experience sciatic pain due to the lack of padding protecting the sciatic nerve. Because of this reason I've had an amazing plastic surgeon at Children's, Dr. Greene, put in a lot of cadaver skin twice to not only "fill the void" from where the muscle was, but to protect the sciatic nerve from getting damaged. Before I had the muscle removed, I experienced sciatic pain often. I believe that since the muscle was dead and hard like a rock, that it would occasionally push against the nerve causing pain. Since I had the muscle removed for almost 4 years now, I've rarely had sciatic pain which has been a blessing. The reason why I believe this pain is stemming from the sciatic nerve is because the pain can be shooting down the top of my hip through the buttock and occasionally right behind the knee. If it isn't a shooting pain, it can be a throbbing, stabbing pain different from the pain I usually have daily from the FAVA lesions. The pain also isn't running through the FAVA lesions. I noticed that I usually get the pain while sitting for a decently long period of time so I've made an effort to avoid doing so but it hasn't helped all that much.

Yesterday I woke up in a great deal of pain and each step I took was more painful than the last. As much as my mind was telling me not to, my body was telling me that I needed to use the cane all day. The small amount of weight bearing that was replaced by the cane really helped me. However, like I mentioned in my Walking Without Shame post, the emotional toll of using the cane can be worse than the physical benefits at times. I felt like I was taking a step backwards in my health.  So whenever I'm in extreme pain or feel like the world is crashing down on me, I tend to write down how I'm feeling in hopes that maybe it will turn into a good blog post. What I've noticed when my mind is back to "normal" is that these thoughts during the pain episodes can be very detrimental to my over-all well being. "What if's" and blame flood my mind.

Sunday night I wrote this:

"Now I'm in pain and it seems like it completely consumes me, who I am and what I am able to do. I automatically think that I've failed because there are very few things that I can do to help my pain and I've missed out on one for over a week now - yoga.

The pain consumes my body and my thoughts. I get stabbing pains that dig into me like knives and intense throbbing pains that seem to pulse throughout my butt and thigh. I automatically go to the one thing that instantly relieves my pain right now and numbs the area - bengay cream. For some reason it works and before my anxiety gets out of control and I start to panic, I instantly grab the bengay. It numbs the area so it feels like dull pins and needles instead of deep, pulsing pain that radiates through my butt and thigh while consuming my mind. My heart races because I start to panic, "not now" I plead. "Why me?" I always ask. Once I start to get pain relief, my mind begins to calm and settle and my heart stops racing. It is the light at the end of the tunnel. But what if the bengay stops working? What if one day it doesn't help anymore? What will I do and how will I cope? "

Compared to how I used to think when I was in pain, I know I have come a long way in the right direction. However, I still feel as if my thoughts are still at times detrimental to my over-all health. I start to blame myself for the reasons why I'm in pain as if I'm responsible and tell myself that it is "my fault" that I'm in pain. I search for reasons how I can blame myself instead of accepting the good things that I've done for my pain instead. I hope to change the way I think so instead of focusing how bad the pain makes my life, I can focus on how far I've came in terms of my pain and what lessons I have gained from having chronic pain. I feel like it is easier to focus on the bad things in life. I already know how much harder the pain makes my life for the worse, but why dwell on it and make myself feel worse? This is a mindset I hope to be working on to help my pain.

Demi Lovato's song Skyscraper reminds me of this mindset that I hope to achieve. I like to use music to influence my feelings and actions at times and when she refers to this thing or person who is trying to bring her down, I associate this thing as my FAVA. I use this song to remind myself that it will continue to try to bring me down but I have the strength to rise from the ground like a skyscraper.

Skies are crying
I am watching
Catching teardrops in my hands
Only silence, as it's ending, like we never had a chance
Do you have to, make me feel like there's nothing left of me?

[Chorus]
You can take everything I have
You can break everything I am
Like I'm made of glass
Like I'm made of paper
Go on and try to tear me down
I will be rising from the ground
Like a skyscraper
Like a skyscraper

As the smoke clears
I awaken, and untangle you from me
Would it make you, feel better to watch me while I bleed?
All my windows, still are broken
But I'm standing on my feet
...
Go run, run, run
I'm gonna stay right here
Watch you disappear, yeah
Go run, run, run
Yeah it's a long way down
But I am closer to the clouds up here
...

Pasted from: Demi Lovato - Skyscraper Lyrics | MetroLyrics 

Compromising Physical Health for Emotional Health & Cryo Update!

Especially with chronic illnesses we constantly hear how we need to put our health first and to take care of oneself. So what is health composed of? When we look at the health triangle, there are many categories of health that make up who we are including physical health, mental/emotional health, social health and spiritual health. Having FAVA I'm constantly struggling with my physical health and the pain that accompanies it. However recently I've been struggling with my emotional and social health.  We all know how important it is to address depression seriously and how dangerous it can end up being if left untouched but physical health is just as important. So what do you do when your physical health is pointing you to take a different direction than your emotional health? Although we can try to accompany both regardless of which direction we choose, in the end it seems like one is still being compromised for the other.

Medically I'll be needing another surgery in the near future since the cryoablation wasn't as successful as we hoped. The mass is still hard and painful and although I know I need to have it treated in order to control my pain levels, I know I'm not ready to put off college another semester. I just took a year off and I don't feel like I can handle taking another one off. My physical health tells me to have the next surgery soon but my emotional health tells me to go back to school and manage my pain until the summer. So I'm struggling with where this line is between emotional health vs physical health. Neither one is more important than the other in my opinion but one will be compromised when I make my decision no matter how hard I try to address both simultaneously.

I find it vital to be mindful and aware of the pro's and con's when making health decisions and to be open to new opportunities and options in order to make a smart and knowledgeable decision. Although I am one to act on my thoughts and not just think about them, I tend to make my decisions based on what I want to do rather than what I should do. However this time with school, I am being mindful of my hospital and school resources and how much effort I can willingly give to make school happen and I am willing to take the challenge this coming semester.

"Wonder when and where and how you're gonna make it

You know you can if you get the chance

In your face as the door keeps slamming

Now you're feeling more and more frustrated

And you're getting all kind of impatient waiting

We live and we learn to take one step at a time" 

-Jordan Sparks

I spoke with Dr. Shaikh the other day and we decided that in order to have a solid surgery plan they will need more imaging to see what the FAVA looks like now that we are post-cryoablation. Since I'm still experiencing significant pain daily, it is safe to say that there definitely will be another surgery soon.  I will be getting an ultrasound with a new contrast that should show the FAVA malformations better than previous contrasts and we will hopefully be able to see smaller, scattered malformations as well if there is enough blood flow. In the near future they will be able to use this same contrast in MRI's so thankfully research and technology is heading in the right direction! We are kind of hoping that the current pain is from untreated FAVA malformations (that was missed) so we can do the cryoablation on those in hopes that it will be successful. If the cryoablation didn't work for the pain on the treated FAVA's, then we are considering resection of the lesions which will most likely be done by Dr. Spencer. For now I'm just waiting on the ultrasound appointment which will be in early January.

The whole process on getting the ultrasound, figuring out what to do, and later booking the procedure is expected to take quite a bit of time. I've been extremely frustrated with the amount of time I've already had to wait and they understand that I'm starting to get impatient. With that said, they as well as I believe that I'll be much happier if I can go back to college amongst this waiting time while accompanied with a steady pain management plan. Although I am afraid of the pain alongside college, I believe that it will be possible as long as I remain dedicated to strengthening and stretching the hip and leg daily and maintaining an extremely low stress level so that my pain won't get out of control. I am 100% sure that my physical pain gets immensely worse when I'm stressed. I believe that going back to school will help with my depression and emotional health as long as I maintain a healthy balance between exercise, stress management, pain management while achieving good grades. I don't expect this to be easy but I believe that I have enough energy and dedication to give it a try. Hopefully Boston Children's Hospital pain clinic will be able to ease my pain without heavy medication in order to make this semester possible.

As much as I'm worried about pushing my next surgery back until the summer, it is not a rush to get it done. There is no way to know if the mass will grow larger or remain the same size but that's a risk I'm willing to take. I  might be in more pain by waiting but I'm not at any other medical risk. I'm hoping that I will be able to maintain my physical health with the resources available to me and my dedication with the exercises I've been able to do. Where do you lie between your emotional and physical health? Do you feel as if one is being compromised by the other at times and how do you decide what to do? Where do you draw the line?

"Taking Chances" - Celine Dion