To A Happy & Healthy New Year!

2012 has been filled with many challenges and I know 2013 will be sure to bring many more!  

I started 2012 with a femoral revision surgery that had to be post-poned till the spring. I had the right femoral revision in April at Boston Children's Hospital. Dr. Millis did my revision and it was a very successful surgery. The revision involved a trochanteric transfer and has been a huge difference in strength and mobility. I have spent many months doing PT and my strength and function has been the best it has been  in years. Although I still I have anterior pincer impingement and lack posterior coverage, my right is stable and has been consistently improving. I have even been jogging a little in PT (very little, but JOGGING)!

My left shoulder really deteriorated over this past year due to many years of intense physical activity, chronic dislocations and an underlying connective tissue disorder. I have multi-directional instability with primary posterior/inferior instability. I primarily dislocate posteriorly/inferiorly and the dislocations have become more frequent despite shoulder stabilization exercises. Because of this I will be having a reconstruction of my left shoulder which would include a capsular shift, closing the rotator interval and repairing any labral, etc., tears. At this point in time it looks like my left hip surgeries will be pushed back to prioritize the shoulder first. I will be wearing a compression "shirt" to help with scapular stabilization both pre and post-op. It will help in the neuromuscular retraining of my scapulas and shoulders. 

AlignMed s3 Posture Brace

2012 wrapped up my right hip surgeries and will allow the focus to shift to the left in 2013. A left hip scope will performed first to repair the labrum, remove the cam lesion, repair the capsule and evaluate the joint.  I will wear a post-op hip brace to help protect the repairs and control ROM. 2-3 months post-op I will have a Femoral Rotational Osteotomy to correct the retroversion and properly stabilize my hip. The hardware will be removed once the fracture site has healed. 

This has been the first year I have not had classes in 6 years! It was a nice mental break, but I will be pursuing grad courses starting this fall. I have been "soul" searching this past year about what I am "called" to do and I have a love for learning, but I have a passion for patient advocacy. Although I have tossed around the ideas of med and law school, I believe a Master's of Public Health is a way of meshing both law, medicine and ethics. I may even pursue it in combination with a Master's of Arts-Bioethics or Biology. I would love to be able to work for a hospital like Boston Children's in their Government Relations department. 

Every year I set new goals for the year. This past year I have been able to increase my physical strength and overall fitness. I am continuing on my goal to lose weight, but am pleased with increased muscle tone and look forward to slimming down in 2013! This year will bring many surgeries, but I have a great team and will be able to go in as strong as I can and hopefully that will help with the recovery process. This year I also plan on taking my work with Advocare, a nutrition & performance supplement company, and gaining some momentum and income. I want to be successful and have the ability with self-employment to maintain an income while undergoing surgeries and recoveries. Please check out my site: /www.advocare.com/121020640

I know 2013 will bring many challenges and its fair share of ups and downs, but hopefully more ups than downs! I will have a neice come June and my older brother will complete his first overseas deployment this year with the 10th Mtn. My current apartment lease ends in April and I have been looking at new places downtown and in the Carmel/Fishers area of Indy. I plan on continuing my involvement with patient advocacy. I look forward to starting a graduate degree, but I know with surgeries and recoveries that there will be many challenges. I have to come to realize that surgery will be part of my life because I have EDS, but I also need to be able to live my life. 

Wishing everyone a Happy & Healthy New Year!

Personal Mission Statement

I will live each day striving to be closer to God.

I will live each day with courage and a belief in myself and others.

I will build healthy, loving relationships within my family, friends and those around me.

I will live by the values of integrity, freedom of choice and a love for all people. 

I will strive to keep commitments not only to others but also to myself.

I will remember that to truly live, I must climb the mountain today, for tomorrow may be too late.

I will act in a manner that brings out the best in me and those important to me. 

I will be renewed by my own personal victories and triumphs.

I will continue to make choices and live with them.

I will not make excuses and blame others. 

I will, for as long as possible, keep my mind and body healthy and strong.

I will help others the best I can, and will thank those who help me along the way

Merry Christmas to All!!!

I am pleased to announce that I will be an aunt to a baby girl, Eloise LaVonne, June 2013!!!

My older brother, Michael, and his wife, Danelle, are expecting their first child June 3rd, 2013. This will be the first great-grandchild, grandchild, etc., for both her sides and our sides of the family, so needless to say this will be a very spoiled baby! My older brother is an active-duty Army Chaplain at Ft. Drum (Upstate NY) with the 10th Mountain Division (1-87th). Danelle is a photgrapher. They will be amazing, loving parents! I am so excited for them and for the family to welcome a baby girl! Congratulations Michael & Danelle! Merry Christmas! 

Our family had Christmas early. We did the exchanging of gifts, dinner, treats, etc., this past weekend. Michael and Danelle drove out so they would be able to see her family and ours. They spent the weekend with us and headed back up to Chicago to spend Christmas with her family prior to heading back to NY early on the 26th. Michael will be deploying soon so his schedule is tightly packed, but they wanted to see everyone prior to him leaving. I ate way too much food, too many cookies, but had a good time with my family. I have always enjoyed being able to spend time with family, laugh, share pictures and watch a movie (typically with commentary from my brothers). 

Although this week we celebrate Christmas, I have an MRI-arthrogram for my left shoulder, PT sessions and a follow-up with my ortho surgeon. My left shoulder has been increasingly more unstable and painful despite months of PT. My shoulder is stronger than what it was, but has not improved in regards to pain/stability and has added nerve issues to the mix. I have not had an MRI on my shoulder yet and my doc thinks I have more damage than originally thought. Although I have instability, he believes that I have labral tears and possibly other issues that will need to be surgically addressed. My shoulder is at a point where it just can not compensate anymore. I will also be getting an injection of cortisone/analgesics to help with pain/inflammation in my shoulder, since we will already be doing an arthrogram. I will find out my results on Friday when I see my ortho and we will discuss more details at that time. 

I will be having my left hip scoped locally by Maiers to address numerous issues. Although neither Millis or Maiers are confident that the scope will offer enough relief, I have numerous issues that need to be addressed that not just one surgery will be able to address. I have dysplasia, femoral retroversion, anterior & posterior labral tears, residual cam lesion, bursitis and capsular damage. We are planning on the scope first, then the femoral osteotomy. Typically, the scope is outpatient, but I will be staying overnight due to known issues and additional repairs. I will also be wearing a post-op brace to help with stability because I am overly flexible. 

We are hoping the added precautions will help with the recovery and maintain the repairs till the additional underlying issues can be addressed by Millis during an open surgery later this spring. It looks like 2013 will start out with a couple surgeries! 

I hope that everyone is able to spend this Christmas with the ones they love and care about and a Merry Christmas to All and to All a Good Night! 

The Journey Continues...

 Another year is coming to a close, while at the same time I am gearing up for what I know will be a challenging 2013. Here is an update of my last few months and some future plans in the works...

 I am 8 months post-op from my right trochanteric transfer/revision and hardware removal. I saw Millis at the end of October for a 6 month post-op as well as diagnostics of my left hip. My right hip has been better than it has been years and Millis was so greatly impressed. He told me that he did not think the right coming back to this level was even possible. I do have residual pincer impingement, excess bone growth on the iliac crest and hardware remains in the femur. That will be dealt with during the left femoral osteotomy at this point or on its own at a later date.

 As for the left, it had been put off until the right was stable enough. Three years later, we are now investigating the left. I have had a scope on the left, but nearly three years ago. The left hip has a labral tear, cam impingement, bursitis, mild dysplasia and femoral retroversion. As of right now, the scope to address the labral tear, cam lesion and bursitis is scheduled for Jan. 22nd, 2013. The idea is that because the left femoral torsion and dysplasia are not as bad as the right that the scope may be enough. However, both Millis and Maiers were not convinced that the scope would be enough and the likelihood that it will require a FO is highly probable. Although I do not like the idea of another 2-3 hip surgeries, I know that Millis would not steer me wrong. I can also see that even though the chance is small that a scope will be enough, that Millis would not want to put me through the pain of an FO if not at all necessary, especially because of all the prior surgeries. Whatever Yoda wants, I will do :)

 During the most recent trip to Boston, my best friend, Jessica Nelson, was able to be my travel buddy. We had such a blast! She was able to experience a little of what I deal with and even met the doc himself. We toured the city, shopped, spent Halloween in Salem, visited a hip sister of mine and even experienced Hurricane Sandy! We had such blast!!!

 I began working for a company, Advocare, that is a direct-sales, health company. Advocare is a world-class nutrition company specializing in health and wellness, weight management, vibrant energy and sports performance. I was approached by an Army doc from my former unit because he thought I would benefit from a particular product already knowing my medical history. I started using the energy drink, Spark, and couldn't believe how much better I felt. I continued to use the products and saw improvement in my PT. My dad started using products and has lost 26lbs in a little over a month! I felt so much better using the products, so I took the step to be a part of the company. I have a great team of people teaching me the business aspect of the company and encouraging me every step of the way!

 http://www.advocare.com/121020640

 Advocare will allow me to be able to work despite surgeries and constant appointments, etc. It will also allow for financial growth and stability that a traditional job would not be able to offer.


 Other Updates:

*Shoulder-Although my shoulder strength has increased, I have not gotten a lot of relief in regards to inflammation and pain. I am also developing nerve symptoms in a couple of my fingers.

*Hips-Left scope is scheduled and plans for further surgeries are in the works.

*Jaw- I have had TMJ issues for many years, but has been incredibly painful since having a root canal this past July. I actually have a displaced disc on my left side that helps cushion the joint. When opening my mouth, my jaw shifts down and out to the side prior to opening fully. My jaw will move in and out of place and has locked while closed. Traditional, non-surgical options are no longer working and surgical options are being considered for the upcoming year.

*RSD/CRPS- My right leg has been worsening. I had a spinal injection for low back issues, but resulted in a spinal headache. A sympathetic block typically brings relief, but was not successful this last go around. We will now be looking into other treatment options, probably in conjunction with a hip surgery.

*EDS- I am scheduled for the EDS Clinic at Cincinnati Children's Hospital end of January, but am reconsidering to just combine an EDS appointment with hip surgery at Boston Children's. I would like to have a place a little closer to home in regards to continued, specialized care for the EDS. It was also depend on hip surgery, recovery and what complications may arise.

I am looking at graduate programs focused around health law, patient advocacy, etc., for the fall of next year. I am also hoping to find a new apartment when my current lease is finished. Another crazy year is about to begin!

5 Weeks Post-Op

This past Friday marked 5 weeks post-op from my trochanteric transfer osteotomy and femoral osteotomy hardware removal. I saw my local OS for new x-rays and incision check. Fortunately, my incision looks great, but the x-rays did not look as promising.

I had been anxiously awaiting this appointment to see how my bone healing was progressing. I have a history of poor wound healing, but with the FO I had a delayed union causing the bone to collapse and shifting the greater trochanter 2.5cm higher than my left hip. I was given a bone stimulator to help complete the femoral healing and it was successful. I had to have a last-minute surgery post-poned, but it was successful and then on Good Friday I had the revision to re-position the greater trochanter. I believed that using the bone stimulator from the start of this recovery would be very beneficial in the healing progress and lessen the chance for complications. This was already the surgery to fix a complication of a surgery done to fix a botched surgery. I was almost positive that my bone was healed by how I felt and that I had been using the bone stimulator religiously, but it did not seem to help as much as it was suppose to. When speaking with Maiers he said it may be healing, but actually looked as if the bone that was re-positioned is beginning to fragment and that the major pin in place is bowing. I felt like I was punted in the gut. I am waiting to hear back from Millis, but it was not the positive news I was waiting to hear! I still feel in shock and am not sure what is going to happen next. We have tried every precaution, equipment, etc., yet I am still in the same position with even yet more complications and a right leg that is not healed. This was "suppose" to be the last right hip surgery needed, but if the trochanter fractures or breaks apart I will need another surgery being that it's attached to muscle. etc. My right leg will probably always be weaker, but the more that is needed to be done to correct issues the farther the reality of running, Commissioning as a U.S. Army Officer, etc., move farther out of view. To top it off, the longer I remain on crutches the more unstable my left shoulder becomes. There is nothing that can be done about it until I am off crutches, but with delayed healing that also delays being able to ditch the crutches. With the added stress my Raynaud's has been flaring, but with an added twist. I typically get symptoms with cold, but was unaware that stress would affect it as well. With the pressure my shoulder is under my hand will turn bluish in color, which is new for me and alarming at first, because I thought it had to deal with my shoulder instability, which in a way it does, but is just a new turn on my Raynaud's. So yet again I am waiting on word from Millis!

I am trying to stay positive and maintain my precautions till I hear word otherwise, but it feels like my life is a game of chutes and ladders and that I have been hitting a lot of chutes lately! I am ready for the pool to open so that I can enjoy some exercise without stressing my body. I am also looking into therapy yoga to help with my mind, body, spirit, etc. I am willing to try whatever it takes to get my life back or a new perspective on the one I have. I feel that I may be naive to think that I can be the same person I was 5 years ago. There are things I need help changing and adjusting to and a new outlet physically for me to enjoy. I do know that I want to stop having surgeries though!

Right Hip Surgery #5 (9 Surgeries Total)!!!

I am a little over a week post-op from my right hip surgery. I had a right trochanteric osteotomy and hardware removal on Friday, 6 April at Children's Hospital of Boston with Dr. Millis. This is my 3rd hip surgery with him and hopefully I will only need one more to repair my left hip. I continue to be amazed at the level I care I receive at Children's. Every single person you meet is incredible. One of my pre-op nurses has worked with Millis for 40 years. The funnier part is that she says he was the same 40 years ago, but is just grumpier now LOL My day nurse, Josh, was from Sierra Leone and came to the U.S. with nothing, worked 3 jobs, went to school and was just amazing to talk to. We even talked politics! My night nurse, Matt, was also so nice and caring. I was also lucky enough this time to get a private room. It was my first time in a private room, but I also enjoy roommates too because we are typically similar ages and are able to talk with each other and have some other company.

Pre-Op/OR: I had to be at Children's by 9am for a 10:30am start, but with Millis I waited an additional 2.5hrs till surgery started. An IV was started pre-op to help with hydration since my veins are typically very difficult to get lines in. I had to wear TED hose on my non-op leg, but I was able to wear my own hot pink leopard slippers! I was able to chat with some very kind nurses including Mimsy, who I mentioned before has worked with Millis for 40 years! At the last minute Millis recommended NOT having an epidural because he wanted me up sooner with this surgery and an epidural would delay that. It was also part of the reason I was unable to get ketamine either. It would delay PT and I would have needed to have stayed in the ICU, so we decided against that as well. It did make me very nervous with pain control not having those and just doing general with a pain pump. I was given a bit to relax me prior to the OR, but it didn't work as well as I'd hoped. The staff could tell I was very nervous and Millis even held my hand as I was put under. I have never had a doc do that before, but it helped ease the nerves. The surgery was suppose to last 2.5hrs, but ended up lasting about 4 hours. I stayed in the PACU for about 3 hours because I was quite cold and having a couple issues. I made it up to my room at about 7pm.






In-Patient Stay: I was in-patient at Children's from Friday, surgery day, till Tuesday morning when I was discharged super early to make our 7am flight. Friday and Saturday I was not allowed out of bed and just to rest. I had thigh-high TED hose to help with swelling and prevent blood clots. They were not very comfortable because my right leg was so swollen so I was able to have them changed to just knee-high. I also had to wear compression pumps on my calves to also help avoid blood clots. I had a catheter in until Sunday, when I had PT for my first time. 15 minutes nearly wore me out, but I walked the bar to the end and back. Monday, I had 2 PT sessions and was also able to take a shower. It felt amazing and I was able to get into some of my own comfy clothes. Unfortunately, Monday I also had to have 2 enemas because the Miralax and Milk of Magnesia was not effective. I tried staying hydrated as well as eating high fiber foods and yogurt, but no luck :( I was also able to sit up in a chair and watch some movies. I was also able to FaceTime for the first time with my big hip sis, Sarah Zimman, and good friend, J.R. White. It was awesome!

PT Restrictions: I have more restrictions this surgery then I have ever had. I am not able to bend past 90 degrees, but can also not lay flat at 180 degrees. So, I sit or lay in a slightly bent position. I am also not able to "roll" by leg in or out, so it stays straight. I can not cross my right over my left leg, but can do the opposites. I can not abduct or adduct my leg, which means I can not lift my leg out to the side or bring it past my left leg like a pendulum. These restrictions are for at least 4 weeks till my first post-op appointment. I am also 1/6th weight-bearing till then as well. I use a bone-stimulator every day as to help promote bone growth and avoid another delayed union. After Millis sees my 4 week post-op x-rays he will determine what I can do from there and what the PT plan will be.




My Mom and I flew home early Tuesday morning, but it was not the greatest of experiences. I was completed violated by TSA with a "pat-down." The wheelchairs were also very small, almost pediatric size. They couldn't find a wheelchair initially and I had to very slowly crutch to security and the gate. When I got onto to the plane I could not even fit in the seat because my hip was so swollen. I am not that big of a person and at that point I broke down. I was in tears after TSA, but the flight situation made me feel horrible. I had some great flight attendants who moved me to the back row to give me two seats with the arm rest moved up and to sit with my mom. Typically those seats are for the flight attendants, but they gave them up to me which was so kind. I wish I would have known and would have booked a non-stop flight, preferably in first class because those flights are not packed at all and usually get bumped to first class for comfort. Lesson learned.

BOsToN bOunD

I leave for Boston in less than 12 hours and I have been finishing up last minute details and chores to prepare for this surgery. I have tried to get everything ready so that there won't be anything needed to be done while I am gone, but having my dad and little brother watch the apartment and my dog means that it will probably be un-done by the time I get home. LOL I have also been playing nurse for the last week between my dad being sick with a respiratory infection and Chloe having a cyst removed on her shoulder, poor Fuzz. I have been doing my typical chores and then some caring for my family. Gladly, both are on the mend. Chloe is like a small child though and doesn't understand that she can't rub and scratch at her stitches, so she ended up adding to the wound. But, she is healing and will get her stitches out when I get home from Boston.

I will be leaving early tomorrow morning with a lay-over in Chicago. I have pre-admitting and pre-op appointments in the afternoon and then, some good food at either the Cheesecake Factory or PF Changs! I will find out my surgery time tomorrow afternoon and I am hoping that I am in the morning. I will be at Children's until the morning of the 10th and then we fly back to Indy. My mom is going with me again for this trip. I think she just goes for the shopping ;-)

*Shoulder Update: I had an appointment with Dr. Misamore at Methodist Sports Medicine a couple of weeks ago. He does agree that my left shoulder is unstable, but unfortunately until my hip surgeries are complete and I am off crutches there is nothing we can do at the moment. He thought it would have been a lot worse with EDS, but with being so active for so long I have had good muscle tone which has only helped. The prolonged use of crutches has really taken its toll. I asked about PRP or Prolotherapy and he did not believe either were a viable option. He has not found any research that supports there benefits. I also asked about a cortisone injection for the inflammation and being too close to surgery that was also out. It won't be an option post-op either until the bone is healed because anti-inflammatories can inhibit bone growth. We also spoke about PT and that is post-poned until I am off crutches or we risk over taxing the muscles which is what is holding my shoulder together and we do not want to create more of a problem. He doesn't support surgery with EDS either, because research shows that with EDS time will only un-do the surgery and wouldn't be worth it. I was glad to hear that he didn't think my shoulder needed surgery! After I am off crutches my PT will add exercises to my therapy regimen to help improve strength. I look forward to getting back into shape because it will only help this problem and it's long overdue!

I am hoping to see my big hip sis, Sarah Zimman, this trip, but she has had a lot on her plate with the death of a close friend and her apartment building catching fire. Fortunately no one was hurt in the fire, but the damage was severe. Please keep her and her family in your prayers.

I will post more updates once I am home from Boston. Hopefully, this will be the last surgery I need on my right hip! Wish me luck!!!

Surgery Date is Official!

The surgery date has been set! I will have my blade-plate removed and a trochanteric slide osteotomy. Two more additional screws will then be added, but placed in a way that they would not need to be removed unless the metal became an issue. I will also be having some excess bone growth shaved down in the front of my hip. I have my pre-op appointments the day before and will be talking with the anesthesiologists/pain-management team about having ketamine used during the operation and in-patient stay. My stay at Children's should be 3-4 days depending on how the surgery and recovery goes. I will post updates as I get them! EEEP...less than a month to go!

Tentative Surgery Date: April 6

I heard from Dr. Millis via email on Friday afternoon and will hopefully hear from him via phone call in the couple days. We have tentatively set my surgery date for April 6th or Good Friday. There has been marked improvement in regards to bone formation since seeing Millis in December, so it looks like the femoral blade-plate will be coming out. I will also be having a trochanteric slide osteotomy in which the greater trochanter will detached, lowered, and reattached to a lower portion of my femur, but at the same height of the greater trochanter of my left hip. It will then be fixated with 2 large screws.



My FO incision will more than likely be re-opened to use the same approach. I am working with my pain doc and Millis as well as Children's to hopefully have a ketamine infusion/treatment during the surgery and the stay in the hospital to help with the CRPS. I will be in-patient for about 3-4 days. I will also be having some bone overgrowth shaved down in the front of my hip, so the surgery should last about 3 hours. I am not sure of all the particulars for the recovery in regards to time non weight-bearing because of my poor healing. But, I also have my bone stimulator from the beginning of the recovery, so hopefully it will continue to help with the healing progress. I will be anxious to get back to PT/Sports Performance because of how much it has already helped and hopefully the next time around will get me even further after the necessary tweaks are completed. I am also staying optimistic that this will be my last right hip surgery and will be able to move on to my left and ultimately, take a break from surgeries after this year.

Unfortunately, my left shoulder has been flaring terribly lately. It feels like a tendinitis, but you can definitely feel the crepitus with any movement. At times it feels lax and even unstable. I have tried to work on strengthening exercises, but it only seems to get aggravated with more use. I have will be seeing a shoulder surgeon at Methodist Sports March 20th who also has expertise with EDS. I am hoping it does not come to the point of surgery, but alternative forms of treatment like PT and NSAIDs are no longer enough. I am hoping he will have some answers for me and a game plan on what to do next.

My goal during the next weeks until surgery is to increase my cardio endurance and lose about 10lbs. With constant surgeries over the last few years my weight has fluctuated so I am trying even harder this year to get into routines of better eating habits and consistent workouts. At my prime with ROTC and running I averaged between 148-152 lbs and about 16% body fat. Right now, I am about 170lbs and hoping to drop about 10lbs with increased cardio now that my hip is strong enough for extended time on the elliptical and even walking on the treadmill. This year I am going to "get ripped" and get in the best shape I have ever been. The harder part for me is cutting out a lot of sweets :) I am also learning to cook more healthy meals. I know diet is a big part of carving out a lean body and I need to learn better eating habits. I have been working on goals in stages and diet and weight loss are never easy for me so I will continue to work until it is muscle memory ;)

I will post updated information after I hear from Millis!

8 Months Post-Op

I am 8 months post-op from my FO with Dr. Millis @ Children's. I saw my local OS today, Dr. Maiers, for a follow-up and to get new x-rays. It does look like the fracture site is starting to ossify, but Millis will be the judge of whether or not it is healed enough to do the "trochanteric transfer" and align it with my left hip. During the healing process the bone shifted leaving the greater trochanter of my right hip 2+ cm higher than that of my left. It effects the strength and function of my right hip, not to mention throwing off the alignment. The femoral blade-plate and screws will come out, the greater trochanter adjusted and will probably be left with 2 screws and hopefully no more surgery on the right hip. My left hip has been hurting quite a bit, which can be from a variety of factors, but right now the chronic bursitis and feeling of impingement are aggravating. I am hoping in 6 months my left hip can be fixed and I can take a break from surgeries for a very long time. Millis does not believe that my left hip will need an osteotomy, but probably more like a residual impingement.

I am very apprehensive just thinking about another invasive hip surgery, especially on the right because it has been such a long struggle trying to fix a problem someone else created. But, this is the first time I finally feel like we are truly coming to the end of this road. I feel like I am getting stronger with PT and getting to a point physically I could not have imagined a year ago. My PT and I have even been talking about the possibility of getting strong enough to run! I am feeling positive about the steps and direction I am headed, but also nervous to go through the surgery-recovery process once again. I was actually hoping to avoid or decline the option of the trochanteric transfer, but when I saw the x-rays today I was shocked how "off" it really looked and it clicked in my head why they would push for that option. I ultimately want to what is best and what will give me the best outcome, but it is not always the easiest decision. I also know to expect that every time my right leg is cut into my CRPS goes into overdrive and it becomes a struggle to get under control. I am glad that my new pain doc is pushing for a ketamine infusion started during the operation and maintained for at least 3 days in-patient, which is my expected stay, ultimately hoping to put the CRPS into remission or at least keeping it from spreading. I emailed Millis this evening with x-ray pics and a cd of the images are being sent to Boston, so hopefully I will hear from him soon in regards to specifics!

Skillet - Awake and Alive

I saw SKILLET headline at WinterJam 2012 in Louisville, KY. They have been a favorite band of mine for over 10 years and the show was absolutely amazing! They are a Christian band and not only can they relate to so many, so many relate to them and their music, me included!

February Update

January has already flown by and February is half over! I am still looking for work, but am getting some leads and hopefully an interview and job soon!!! I have been spending my Monday afternoons for the last month at Sports Performance by Methodist Sports Medicine. I have been getting a weekly butt kicking by my PT, Noah. I am really seeing improvements and only have a slight limp at the moment. Each week gets harder, but I am enjoying being able to work this hard. I bought my first pair of running shoes for the first time in years! I have been able to eliminate the use of narcotic pain killers, weaned off crutches, increasing strength and now am going to kick up the cardio and drop some weight. I have been trying to work on things in stages and my next goal is to lose weight and improve my endurance.

I see Maiers next week and will be able to update Millis with new x-rays and we can then plan our next surgical steps. I have been thinking about it a lot lately and I am not sure if I want more done than just the plate removal and some bone overgrowth removed. Having a trochanteric transfer means breaking more bone, weeks non-weight bearing and starting over. Not to mention every time my right leg is operated on, my CRPS gets worse, especially through the healing process. I would rather just do the plate removal and then concentrate on my left hip. My left should hopefully only need a scope for residual impingement, but we will know more after some new images. I am really pushing for one final hip surgery and to be able to heal and move on. I will continue to think and discuss this and will make a decision when I know more information in a week or so. Fingers crossed all goes well!

Although my hips seem to be improving (the left is irritated), my nerves are not doing as well. My new pain doc has confirmed my "nerve issues" are CRPS-2 and the initial "trauma" that set it off was my RPAO in June 2009 when not even 24 hours post-op my thigh turned a bright and hot red. It was not an infection and no one could explain it, but it was actually the leg over-reacting to the surgery. I also found out that my low back pain that I assumed was from my years of hip surgeries and continuous gait changes is actually a disc degenerating and slightly bulged between L4-L5. It is not the cause of my CRPS, but is something I will need to watch and take care of in the future. It could have been from years of athletics, Army training and also from the hip surgeries and throwing off my spinal alignment. I am already doing all I can to help it with PT and strengthening core muscles, working on even gait, etc. My pain doc also wants to wait and have ketamine used during my next surgery to help with the CRPS and hopefully put it into remission. If necessary, we will do another sympathetic block if needed, but am trying to wait unless I have a flare prior to surgery that is out of control. We are also increasing my Lyrica to three times a day to help with the increase in nerve pain hoping that it will be enough and to use the "big guns" around the time of surgery. I really like Dr. Ratzman. He is very thorough and we seem to be on the same page in regards to treatment.

Tomorrow is Valentine's Day! I have not had the greatest history with this "holiday" and even though this year I do not have a significant other to share it with, I will be sharing the day with the ones I love. My family gives cards to eachother and will watch "Be My Valentine, Charlie Brown."



Enjoy everyday with the your loved ones!

A New Pain, Doc That Is!

I started this year off setting new goals and changing things I was unhappy with, etc. My first accomplishment and goal met for the year was weaning off all of my narcotic pain killers. It was not an easy task, the nausea was terrible, but I am definitely glad to no longer have them in my system. I feel more alert, aware, clear and have more energy. I did not realize how much they were effecting my energy, my body, and even my spirit. My dad tells me that "I have the twinkle back in my eyes." Overall, I feel better and am looking into other avenues to handle pain.

Being off the pain meds have not changed my level of pain which means it is my nerves as the source of pain. I saw a new pain doc (Dr. David Ratzman)that specializes in pain medicine, management and anesthesiology. He is also my besties pain doc and is familiar with EDS and highly knowledgeable with CRPS. I had so much paperwork to fill out prior, but the appointment was thorough and everyone was so nice. You could tell he cares about the patients and puts effort into finding what is best for them. We talked about my medical history and he want to look further into CRPS, because the presentation is not as typical. I told him that my surgeon (Millis) says "nothing about me is usual." It is true. Nothing is simple, easy or normal :) I have a lot of the symptoms and presentation of CRPS, but do not get as severe of the color changes, it is still falls within clinical diagnostic standards of symptoms being out of proportion to others. Some people may have severe pain with little to no vasomotor response and in others, there may be little pain with intense vasomotor response.

Symptoms of CRPS include:
-severe, constant burning pain
-edema
-increased/decreased hair or nail growth
-vasomotor instability-vasomotor changes range from cool-pallid, mottled changes from vasoconstriction to warm erythematous changes of vasodilation
-diminished motor function
-muscles spasms
-bone changes



I experience a majority of these symptoms and they started with electrical pain and numbness in my right foot and have developed over the last couple years to include a severe burning pain in my thigh, etc. I have tried everything from high doses of Neurontin, desensitization therapy, sympathetic nerve blocks and regional nerve blocks. I am currently taking Lyrica 200mg BID and Cymbalta 120mg daily to help with the nerve pain and flares. I maxed out Neurontin and it was causing too much stomach sensitivity so switching to Lyrica has been very beneficial. Ratzman believed that I have failed numerous conventional therapies, so we talked about what our game plan would be. We talked about doing a prophylactic sympathetic block prior to surgery in March to help with the nerve issues. He also brought up having a ketamine infusion done throughout the surgery and hospital stay because of the methods I have failed and it can offer longer relief than the sympathetic blocks and even "reboot" the nerves in a sense. He was going to request records from Children's as well as speak with Millis and their anesthesiology department to be able to arrange the treatment. It would be the best option right now. He also wanted me to think about a spinal cord stimulator which is surgically implanted and sends pulses or vibrations to the nerves to block the pain signals from the spinal cord. It would have to wait till after my surgeries are over because it effects imaging. But, because I have failed so many of the treatments and the symptoms keep getting worse it is something I am suppose to think about. Having something in my SPINE freaks me out at the moment, but he just wanted me to know that I still have options left.



I also have started intense physical therapy called Sports Performance by Methodist Sports Medicine. It is personal training with a physical therapist and I have been so sore since, but in a good way. Noah is going to kick my butt every week and help with exercises that I need to do to get stronger. AND, I am doing it with my bestie, Jessica Anderson!

My next goals for the year to accomplish are finding a new job since the lay-off, finish my 2 Incompletes from the Fall semester, continue to get fit and stronger and organize/schedule my March hip surgeries. Although the year has not started off as well as I would have liked, I am improving physically and continuing to push towards my goals and dreams with more drive and energy then I have had in years!!!

Act of Valor

Act of Valor is a movie coming out next month that stars a group of active-duty Navy SEALs. It is a story of contemporary anti-terrorism inspired by true events. To watch the trailers go to: http://actofvalor.com



This movie trailer caught my eye as I was doing some research for an art project. I wanted to do a 2-D black and white piece that combined many aspects of the military and those who risk everything to protect our freedom. I was downloading pics from all branches when I came across this trailer and my jaw dropped. This will be an amazing movie starring the men who do this for a living. Nothing could be more real or raw. The brotherhood seen between the men and the courage, honor and loyalty they possess will make this one of the best military movies EVER. These are no actors, but THE SEALs. I am definitely excited for this movie!

I found this interesting because I just began re-reading some of my favorite books which are written by Dee Henderson. She is a Christian author and my favorite books are from her "Uncommon Heroes" series about the lives of SEALs, PJs, Federal Agents, etc., and how they live their lives with Christ, how they have relationships and deal with everyday emotions and fears. I started reading these probably Sophomore year of high school. I fell in love with these books and the sense of patriotism only bolstered my love for God and Country. I have always had a passion and desire to be able to serve.



Ironically, as I am getting back into reading for leisure, even taking a step to re-kindle my relationship with Christ I find more that only excites me to push harder. These also come after I told myself at the beginning of this year that I would do what is necessary to get back into peak physical condition, rehab my hips and pursue active duty. It is interesting how things play out and when I decided to pursue active duty I continually find more that only strengthens the flame.

I mention this movie because of how exciting and unprecedented it is. SEALs, as well as PJs, Marine Recon, Delta, Rangers, etc., are silent warriors that are highly-skilled and trained and risk everything for their fellow warrior, their families, their country. They all do it for no recognition or praise. These men make me proud to be a soldier and to be a part of our history. These men risk their lives everyday, even when the American people know nothing of what they are doing, they risk their lives. Our country has lost a sense of patriotism and community, ideals that soldiers everyday fight to protect. I hope this movie does extraordinary because individuals like this deserve abundant praise and gratitude. I look forward to the day that I began active duty and hope that I have the pleasure to interact with such extraordinary men. God Bless Our Troops!

A New Year and New Challenges!!

A new year and many new challenges to come!

2011 was definitely a rough year, but I am still standing and still fighting! I feel very motivated and am excited for many things to come this year. I like to set goals for myself each year and usually am able to accomplish many of them or continue to work on them as the years go on. But first a 2011 recap!

2011 started off with a hip surgery performed by Dr. Millis at Children's Hospital of Boston. It was a hardware removal combined with removing scar tissue, "tweaking" some issues and a scar revision. Unfortunately, it was not enough and I ended up having a right femoral rotational osteotomy in June at Children's. I was able to meet other fellow hippie, Sarah Zimman & Jillian Murphy, and saw some sites in Boston. It ended up being a 7-day hospital stay, my longest yet. It was very difficult being away from my dad and Chloe for that long. But, Chloe did a great job protecting my hip and keeping me company when I got home.

I continued to work on my paralegal certificate full-time as well as began working at a law firm starting this past August. Working, school and recovering from surgeries was very difficult and trying both mentally and physically. There were many times I felt like quitting, but with the support of my family and friends I was able to keep pushing and finish out the year. It was a relief when finals ended and my paralegal certificate was complete, except for a couple assignments that will be finished via independent study this spring. School this past year was difficult because of how my school accommodates, actually does not, accommodate those with disabilities. Even the disability director stated that violations had occurred, yet nothing changed semester after semester. Instances like those have made me a fighter and stand up for myself and what I believe, no matter what it may take. That was also a reason why I was relieved to be done with school, for now. It is my first semester off for over 6 years!

2011 ended unexpectedly as well. As you know I received an unexpected e-mail from Dr. Millis that my bones had shifted during recovery and would require a revisional FO. I was shocked and not looking forward to doing this surgery over! I then received another email from him the Sunday before finals that he had an open surgical slot for the 23rd and could I be in Boston by then. It was a hard decision to make so quickly, but my parents and I decided to take the slot and we booked the flights and hotel and were in Boston before we knew it. I went through many pre-op appointments on the 22nd after a long day of travel. The time was set and everyone was getting ready for the re-do, but plans unexpectedly changed after x-rays were taken and I had my pre-op appointment with Dr. Millis. Based on changes from x-rays a month earlier and the physical exam Millis and his resident decided that it was too risky and the surgery would be post-poned till about March. WOW! No one expected that. They didn't want to cause the bone to collapse or to have to put another plate back in possibly causing more problems or damage, leaving me in an even worsened state. I didn't want that to happen, but I was also ready to be done with the plate and past my right hip surgeries. I know they wanted the best outcome, but I was devastated and felt horrible that I cost my family money we did not have. But, the exam and new images changed the plans and it was ultimately the right decision. Millis wanted me back in about 3 months after using a bone stimulator to help the healing process. He would then re-evaluate if a revisional FO would be necessary or just tweaking to compensate for the shift and give the best alignment and relief. He also said that he would look at left hip images because it was clear there was a lot of impingement and rotational issues. It may only need a scope, maybe an FO and depending on imaging could be combined with the right. Finally, I felt like we were making progress and I could see the end of hip surgeries for awhile.

After finding out that my surgery was post-poned I made a promise to myself to get as healthy and fit as possible before the next round. I want to be healthier with eating as well as fitness. I have started off by weaning off half of my pain meds and cutting out soda & caffeine. DRINK WATER! I have been going through cook books looking for healthier recipes to cook rather than eating out and have been researching workouts and exercises to strengthen my legs (safely) and get in the best shape possible. I have also been looking at doing CrossFit again. I use to do when in ROTC and at the top of my game. It excites me just thinking about it, but I will need to modify some of the exercises because of my hip. I will also be doing low-impact cardio in place of swimming. But, I am SOO excited to be back doing something I love and that energizes me!

This year I will continue to strive to be healthier, further myself mentally, physcially and emotionally. I will apply for law school, continue to work at a law firm and continue to strive towards my dreams. I also plan on furthering Chloe's training towards a therapy dog and service animal. I am also excited to be able to have time to do more art. It has been a couple years since I completed a piece, but have a new portfolio waiting to be filled! I am already enjoying my break from school and look forward to more time with family and friends and maybe even a vacation!

I am excited and already enjoying 2012! I have been relaxing and enjoying time with Chloe and getting ready for a new week. I will continue to fight for my dreams. I found a quote that was a twist on Freud's original. It stated, "What does not kill me, makes me a fighter." I definitely believe that and my dad has said that even when things seem to have me down, that I brush myself off and keep pushing. I will continue to do that with every challenge I face. It's easier to persevere when they are not many obstacles, but true strength and determination is when you feel like you have nothing left and you keep pushing to the finish line. I am excited and ready...Bring it 2012!!!