Flare-ups, Emotions, Self-Care, & Alternative Medicine

I haven't posted in a very long time but it's time to get writing again! A lot has happened in the past year as far as my FAVA journey goes and I'm excited to start writing again. I've been in school and have had a very functional last 6 months as far as pain management goes. I've been mainly using my diet as my primary source of pain management which has been extremely effective except for the last few weeks. I'm learning that with high stress levels in school, I need to practice more self care and go back to some of my older pain relief strategies. The good news is that I have a few blog posts almost ready to go (including pain relief strategies) so those will be posted soon!

I'm currently experiencing a flare-up which has taken a toll on me physically and emotionally. It's been a while since I've struggled so much having this illness and I find it important to recognize that it's ok to not be okay sometimes. Having a chronic illness can be emotionally taxing on you and whoever is involved and it's okay to take a day off just to practice some self care however that is needed. For me that involved taking a few days off from school (very inconvenient since it is mid-semester and have lots of things to do) but it's proved beneficial so far at least.

Normally my flare-ups involve excessive swelling and some bruising/discoloring which inhibit my walking and include throbbing, pulsing pain and  some nerve pain. This recent flare up lasted for more than 2 weeks which was extremely abnormal so I spent the day at Boston Children's with two of my surgeons who have operated on me in the past to find out what was going on. We did an ultrasound that showed that my FAVA hasn't changed much for the past 8 months which was good news in a way but upsetting because we didn't know what caused the flare-up!  I had always had pain in two specific areas in my butt/thigh so had always imagined that those were the only two FAVA spots left since I had the gluteus maximus muscle removed from my amazing surgeon Dr. Spencer, however I never realized that the disease is more complicated than that. The ultrasound showed the FAVA was infiltrated throughout the majority of my tissues in that area and that those two specific masses were extremely inflamed to the point where it showed up like a black hole on the ultrasound. So even if we tried to resect those two masses which might not be worth it due to the recovery, scar tissue, and how difficult they were to find in the past, I'm still essentially full of FAVA in that area.

So here comes the plan. I'm scheduled to meet with Dr. Trenor at Boston Children's in a few weeks to discuss the possibility of starting sirolimus which is slightly terrifying yet I'm excited. My previous surgeons said that they could try to do the procedures again that didn't work for me but I'm not willing to go through that again. So sirolimus is essentially the only treatment left and wouldn't be started until February if I'm eligible. So until February, since conventional medicine hasn't been effective, I will be relying on alternative medicine to deal with the pain so I can be functional. Medical acupuncture, lots of supplements, essential oils, yoga, meditation, a dietitian, and possibly even aromatherapy is on the list so far! Also, stress management is of number one utmost importance so I will be taking incompletes in some of my courses to reduce my academic course load and focusing on my health right now to bring this flare-up down! Multiple studies prove that stress and pain are heavily connected and this is what we believe had caused the flare-up so I know I need to make a major lifestyle change. Talk about a lot of work!

Hopefully I'm eligible for the sirolimus because I can't express the need for more treatment options for this illness. I know I'm not the only one effected because I've met and talked to so many others who suffer but we need treatment options! So this holiday season, instead of buying pointless gifts for others, please consider purchasing something like a candle or T-shirt from the FAVA foundation where some proceeds go towards the foundation for providing help to those who suffer with FAVA. 

http://www.thefavafoundation.com/donate.html 

https://www.facebook.com/thefavafoundation/?fref=ts 

Some good news is that I'm fortunate enough to be doing my own independent research at the University of New Hampshire about the correlation between mindfulness techniques and chronic pain in young adults while co-facilitating a chronic illness support group on campus that I'm extremely passionate about. Also, my boyfriend and I are taking a vacation to Europe in December and January together while we have the chance before I (hopefully) start the sirolimus!

Felt like I needed to end on a hopeful note,

Best wishes #favahugs

Cryoablation (again), Steroid Injections & Links

Hi everyone! I haven't posted frequently because I was in school and was overwhelmed with classwork. I did well in college managing the pain levels this semester but in March my pain levels got worse. I'll cover my college accommodations and pain management techniques in another post. Early February I took a trip to Boston Children's yet again to talk to the Interventional Radiology team about more possible treatment options to help with the persistent stabbing, throbbing, and nerve pain that accompanies my FAVA in my upper thigh and buttock. After having my previous cryoablation done last September like I mentioned in my "New contrast shows more cryo" post, the ultrasound showed treated lesions next to untreated lesions. Therefore, it was uncertain whether or not my pain was coming from the treated lesions, untreated lesions, or both. In simple terms, we were trying to figure out whether or not the cryoablation was successful in eliminating my pain where my lesions were and labeling it a successful treatment option for me or not.

With this question at play the course of action was to inject steroid injections into the locations of the lesions (combining the locations where I had the most pain with the ultrasound imaging with contrast) in order to provide me with temporary pain relief. The theory behind the steroid injections was if they injected the untreated lesions and I had pain relief, then they would know that the cryo had worked in relieving my pain and the chances of another cryo procedure being successful in the future would be significant enough to continue with that treatment option.

March 16th I had the steroid injections done at Boston Children's with high hopes of it either masking my pain or making no difference. I was a fairly easy day procedure that I did over spring break where I was sedated instead of having general anesthesia. The steroid agent used was 60 mg of Kenalog and 13 mL of Marcaine. To my surprise I woke up in a massive amount of pain and stayed until my pain was managed. It was expected for me to have immediate relief within a couple days however I feel like I took a major step backwards. My pain levels along with the frequency of the pain unfortunately has increased drastically since before the procedure and my walking was impacted greatly. I had to use my cane to walk for a few weeks. With time, the inflammation and bruising went down. It took about 2 months and I'm slowly increasing the amount I walk using my fitbit (that has been a lifesaver may I add).

So, now what? Since the steroid injections, interventional radiology has declared the previous cryoablation unsuccessful and we have canceled the plans for the future cryo that I had planned for the summer. They referred me back to my orthopedic surgeon, Dr. Spencer, who I admire and trust greatly. She is willing to do another resection and cut out the lesions since that has been the only treatment option that has been the most successful. I also contacted my plastic surgeon and spoke about the advantages to add more tissue/aloederm over the sciatic nerve for added protection as well.

FUTURE LINKS AND TREATMENT!

It was also brought to my attention in March that the team is thinking about doing a research study on possibly using Sirolimus to treat FAVA patients in the future. A recent article on the genetic mutations of FAVA was recently published claiming that Cloves syndrome, Klippel Trenaunay Syndrome, lymphatic malformations, and FAVA all come from the same genetic mutation called PIK3CA. They have been using Sirolimus for CLOVES, KTS, and lymphatic malformations which leads them to believe that it might be successful for FAVA patients. It's great to hear that they might have more treatment options for FAVA patients who don't respond well to cryoablation, sclerotherapy or who are unable to get resections. It's been interesting to see how many FAVA patients have had amputations as well due to the pain FAVA has brought into their lives. Although that is not an option for me due to the location of my FAVA, it is so encouraging to hear the positive results of being pain free from having the limb amputated.

Here is the PIK3CA mutation article

However, it is important to remember that EVERY case of FAVA is different and treatment results may differ from case to case. Unfortunately, resection is the only beneficial option for me at the moment but I've heard of patients responding well to cryoablation. Here is a study about cryoablation by my surgeon Dr. Shaikh who is so kind and who I respect and admire his dedication to helping FAVA patients with whatever he can do to help. There are other links to this study if you google it but this one was the easiest for me to link here. 

Also, FAVA is now on Wikipedia! So a simple google search will finally give a brief overlook of the illness! Yay! Take a look!

And yes, I will be posting more often,
Becca #favahugs

Returning To School

Last year I had two surgeries including a debulking and a cryoablation which made me take a full year off of school at UNH and although I'm still in a decent amount of pain, I am back to school for the spring semester before my next cryoablation in the summer. I mentioned in a previous post titled "Compromising Physical Health for Emotional Health & Cryo Update" how I was worried that trying to go back to school would compromise my physical health. I'm taking the risk to continue working on my degree and moving towards my goals. School, especially college, takes a lot of energy and brings upon a lot of stress. I'd be lying if I said I wasn't worried about what will happen this semester.

Fall semester 2013 I found out that the FAVA grew back and I was in incredible amounts of pain. I was taking four classes totaling 16 credits and ended up dropping a class. I became instantly discouraged when my body stopped letting me get out of bed in the morning. I would lay there in pain for hours and not be able to move my legs. It was hard for everyone in my dorm to understand what I was going through but I physically couldn't go to class anymore. I made plans to have my debulking surgery during winter break and I only ended up finishing one class that semester. The other two classes I took "incompletes" which meant that they would extend my deadlines until I felt like I could finish them. Thankfully my dean worked with me to get all the resources I needed. Physically, mentally, and emotionally I slowly began to fall apart. Hopelessness ran through my veins and I had an incredibly hard time staying social and hopeful. The pain was unbearable and my anxiety and stress increased drastically.

I know that I still have untreated FAVA lesions in my thigh and I'm aware that I'm taking a huge risk (pain-wise) to continue to take classes before another procedure. Fortunately, I'm not putting myself at a health risk waiting. My degree is so incredibly important to me and I'm NOT willing to give up my dreams, hobbies, or talents in lieu of this illness. I understand that sometimes I'll have to set boundaries or limitations on things in order to physically succeed but my will-power to mentally succeed is too high to not try. I'm honestly petrified that my body will fail on me and not let me walk or sit through class this semester like it did the last time I was here at school. However this time I'm starting out with a different outlook and I'm not going to try to be superwoman and do things I know my body can't handle.  I'm constantly learning about what I can and can not handle mentally and physically and am learning that it is a long process and not just something you can learn quickly. I believe that there is strength, courage and bravery behind everyone with a chronic illness and you need to discover it in order to grow.

Henry David Thoreau stated  "As a single footstep will not make a path on the earth, so a single thought will not make a pathway in the mind. To make a deep physical path, we walk again and again. To make a deep mental path, we must think over and over the kind of thoughts we wish to dominate our lives." With a deep physical path along with a deep mental path of pushing through the struggles that I will continue to face with FAVA, I believe I can make my way through school and any other obstacle. But I know this mindset has to be used over and over again in order for me to grow.

 Strength. Courage. Bravery. Determination. Perseverance. I am a warrior and so are you. 

New contrast shows more Cryo

I had my imaging appointment at Boston Children's Hospital this past week and it was a much larger appointment than I had anticipated. It was the first time I went into an appointment by myself and took the trip into Boston via train and subway. It felt more real when I went in myself and hit me a little harder knowing that this was truly a chronic illness. Most of the time the people I'm with encourage me that maybe this will be the last time but this time I didn't feel that way. I spent two full hours with my surgeon throughout the imaging and discussing the next steps and actually felt like I got to know the team a little better. After all, it wasn't going to be the last time I saw them and I felt like I should  know them  better and they should know me better. It didn't feel like they were putting on a "professional show" for me; they were truly being themselves and made me feel more at ease with laughter and medical jokes.

When I got into the interventional radiology department, I was given an IV for the new contrast they were going to use with the ultrasound. Despite how friendly the nurse was who gave me the IV, she missed several times and I nearly had a panic attack in the bed because although I've had many IV's I am still not good with needles. They were concerned about me having an allergic reaction to the contrast because I have so many food allergies and the contrast apparently had something to do with eggs. They also haven't used it on many vascular anomaly patients yet, if any so this procedure was extremely new. They watched my oxygen levels, heart rate, and blood pressure and monitored me closely throughout the entire imaging. I got very nervous because if I was to have an allergic reaction, I was going to be admitted overnight and I was at the hospital by myself.

With all the monitors attached to me it felt as if I was inpatient. They gave me a marker to draw circles around the areas that hurt the most although it seems like when the FAVA hurts, all the tissue around it hurts so it's hard to pin point an exact location. In the room there were two surgeons, Dr. Shaikh and Dr. Palotier, along with two nurses and many med students. They were reviewing my old ultrasounds and MRIs and comparing them to the live regular ultrasound before they did the contrast. What was odd about the contrast is that the full effect only lasted about 10-20 seconds before it started to fade and they could only give me a certain amount every 10 minutes.  Therefore, they had to work quickly when the contrast was given. We did ultrasound imaging for over an hour and I had three syringes of contrast. The only side effect I had was dizziness, feeling lightheaded and a bit foggy but the feeling went away within about 20 minutes. It was very overwhelming hearing them talk in all the medical terms trying to figure out where the FAVA was and where it wasn’t but I loved hearing them discuss it in front of me. It wasn't as clear cut as we had hoped and there was a lot of confusion at first.

To my surprise we found the areas that were previously cryoablated and it showed in the ultrasound that it had worked and killed the cells! It appeared almost as a black hole where the cells were no longer there. To me it was pretty cool and reassuring that the previous procedure wasn't useless. However my pain is still there in the same locations like I posted about previously and we found multiple untreated masses close to the area that was previously treated. Thanks to the contrast, we found that both masses around the locations where I had previously had cryoablated were just missed from the previous cryoablation and they are superficial and will be treated next summer after my college semester is over. They did find another small mass that was deep and connected to my sciatic nerve and close to my hamstring which sounded worrisome to me but they reassured me that they aren't worried about it doing any damage because it was so small. However, it is untreatable because  the risk of paralyzation is too great to risk. Therefore, it may cause me some pain but as long as it doesn't do any damage I'll be content. It was scary but now I'm content and am trying to manage the pain before the next cryoablation in the summer.

Chiropractic Pain Relief

A month ago, a good friend of mine who has vertebrae problems in her neck told me how she was going to a chiropractor and that not only has it improved her functioning, the chiropractor also addressed other issues she was having such as food intolerances and vitamin deficiencies. The more she told me about her experiences about going to the chiropractor, it made me wonder if chiropractic care would help my pain in my FAVA leg. At first I was very skeptical about going since I've never had any back pain and the FAVA was in my left buttock and thigh and not near my spine. I thought about how I've had FAVA for about 8 years now with 6 surgeries and no one has ever looked at my back. By removing the gluteus maximus muscle in 2012, I lost a major stabilizer. I've had my fair share of using canes, crutches, wheelchairs and walkers and have limped a great deal. Wouldn't that be enough to throw off my back? When I really thought about it, it made me realize how messed up my spine probably was and I got so angry that no one ever looked at my spine or back before so I chose to make an appointment with the chiropractor.

I told children's hospital that I was going to the chiropractor and I was told to be careful. They weren't very keen on me going but they knew that I take my health into my own hands and that I decided I was going. I told the chiropractor about FAVA and that I recently had some random sciatic pain (that I previously posted about) but for the most part I have a general throbbing pain the majority of the day accompanied with random, localized nerve pain around the FAVA masses. He was surprised to hear that no one ever looked at my back before. I got an x-ray done immediately and found out that my back was curved out to one side and that my L4 and L5 were crooked, most likely contributing to my pain. Fortunately since I'm young and my back has probably been like this for less than 10 years, he felt as if it could be adjusted back to normal within about a month. Yes, I said a month and my insurance covered it!

The solid red line is where my spine should be
and the dotted red lines is where it was.

  

I decided that I would follow his recommendations and see what happened. Even if it didn't help my pain in my FAVA leg, I knew it was probably the best to bring my spine back to where it should be now, so I won't have more severe problems later in life. I thought of it more as preventative care for the future. I've been going to the chiropractor 3 times a week for 4 weeks, for a total of 12 visits where I would use a TENS unit on my lower back for a few minutes and then got a spinal adjustment. A month after my first appointment I got a follow up x-ray. This x-ray isn't as clear as the previous one but they fixed my lower spine (lumbar spine) to go more straight along with straightening out my L4 and L5 vertebrae. Now my upper back has compensated for the lower adjustments but that could possibly straighten out on it's own after a while along with some back-strengthening exercises.

The bottom part is straighter including the L4!

I am so happy to say that within a MONTH of going to the chiropractor, he has cut my pain in HALF since I first started going. There were days I went into the office limping due to a bad pain day and would leave with half the pain and without a limp. He would give me immediate pain relief by simply adjusting my spine and working along the crest of my hips. And what's even better is that the whole experience was PAINLESS! It was all gentle spinal adjusting and I wasn't getting thrown around and jolted.

Unfortunately, the masses in my thigh and buttock are still painful with pressure - if touched/pushed on, if I sit for a long period of time, and occasionally random despite my position.  The FAVA pain didn't completely disappear (like I always wish it would) however, the 24/7  throbbing pain throughout my buttock and thigh isn't as severe as it was before the chiropractor and the nerve pain doesn't occur as often as well. There are some parts of the day, such as the morning, that I have NO PAIN at all! Although I still don't understand the anatomy and their techniques all that well, I can't stress enough how this has helped my FAVA pain in my thigh and buttock and I'm so incredibly grateful that I decided to give it a chance. Of course I made sure my chiropractor, Dr. Eric Goans told me everything he was doing and why because I'm a very skeptical patient with anything anybody does regarding my health.  He mainly used what is called an activator which is a small handheld tool that feels like mild pressure along the vertebrae he is working along (http://www.spine-health.com/treatment/chiropractic/activator-method-chiropractic-technique). I'm not a doctor or an anatomy expert by any means, but there are many nerves that run through and connect to the spinal cord and by releasing abnormal pressure off of these nerves (which can be done through a chiropractor) it can ultimately relieve pain (http://www.spine-health.com/conditions/spine-anatomy/spinal-cord-and-spinal-nerve-roots). Everything that he did was not painful and actually felt really good. We also addressed my diet and vitamin levels which I will post about in another post when I get the results!

I've notified my FAVA team at Children's Hospital Boston about how the chiropractor has helped my pain and am waiting for a response! Hopefully it will become a recommended alternative medicine choice for other FAVA patients. Have you thought about going to a chiropractor or sending your kids to one to help with FAVA pain?

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