A Few Days Left

It is currently in the wee hours of Tuesday, June 14th, 2011. I will be leaving for Boston in about 48 hours. In about 12 hours I will be taking my summer class finals early, leaving only a presentation to do tomorrow night. I really wish these courses would have been offered in the fall because the Professors were nice and the classes were pretty interesting. I took Criminal Law and Bankruptcy Law which only leaves 2 classes, I believe, for my Paralegal Certification. I am hoping to finish those in the fall on a part-time status and work full-time during the day. That is my goal anyway, barring any complications from surgery or recovery. I am fairly concerned about my left hip and shoulder because they are becoming more and more unstable from the burden they have taken. I am hoping PT, Dr. Millis & Maiers, and myself will be able to workout a plan to safeguard my other joints while my right hip/leg heal. I will hopefully find that out on Thursday during my pre-op, etc. I have an entire list of questions and have been adding to them as different things come to mind.

I have felt very overwhelmed lately with trying to finish classes (why I took summer classes, I don't know!), getting my apartment "recovery friendly" and all the last minute things that go on with traveling, etc. I have barely had any time to relax or do anything for myself. I desperately want a break and not one that involves my bones or a stay at a hospital. I have literally gone non-stop for over 2 years with 5 surgeries during that window. I have either been in school, working, recovering from surgery, surgery during breaks or during school, working full-time during breaks to pay for surgery, etc. There has been little or no down-time to relax and at this point I am desperate for some TLC. There has been no trips, weekend getaways, concerts, nothing. I so badly want some time off. I sit here with tears rolling down my face as I write because I feel so overwhelmed. I am trying to stay positive, but I know this is not the last surgery because my left hip still needs to be addressed. There has been so many moments in which I want to cancel and avoid this all together. I have my doubts that I can keep doing this. I am giving all I have just to keep it together and get everything accomplished in the next hours. I am just hoping that I get to enjoy some time in Boston before surgery on Monday. I am planning to meet up with Jill Thursday for a bite to eat and shopping on Newbury St. I hope that some company and cute shops will bring my spirits up.

Boston or Bust

The last couple weeks have been stressful and the next 10 days will only be increasingly more stressful. As the spring classes ended, the summer session started only a few days later, leaving no time for a break. The first weekend of my summer session I spent with my Army National Guard unit to do our monthly training and medical mission. Although I am not physically able to do a lot, it is nice to be in a medical unit where I do have a job and can feel like I am contributing to the mission. And, of course, I do love my unit! I have some very close friends or family and we can make almost anything fun. The downside is that the weekends are very long and with trouble or no sleeping it becomes very draining. I am hoping that after surgery with less pain and better function life will begin to return to normal, I will be able to sleep and function more normally.

SPC. Heather Moon, SSG. Angela Darrall, SPC. Lauren Guieb, Me

My baby, Chloe, turned 2 this year! She has definitely matured a lot and we have bonded very closely. I love her soo much and definitely spoil her as often as I can. The 25th is her birthday and I had planned to get her some favorite treats at 3 Dog Bakery and some new toys. The weekend prior to her birthday I noticed some small, hard growths on the side of her lip, which had not been there just a few days earlier. Sunday morning I took her to Banfield Pet Hospital to see her vet. The vet did determine that they were not cysts, but tumors and highly recommended having them removed and biopsied because there were concerning. Also, since she would already be under anesthesia he suggested dental scaling to maintain her dental health, etc. I agreed and we scheduled Chloe for surgery, but unfortunately, it would be on her birthday. Wednesday she went in for her surgery and dental cleaning. The surgery went great, removed the tumors, stitched her up and sent her home with some pearly whites. She would have stitches in for 2 weeks. A few days later I was trimming her nails and noticed another growth, but on her paw. My stomach sank. I felt so terrible because she may have to go through this process again and that the biopsies may not come back with good results. The following morning we were back at the vet. The vet determined that it was an interdigital cyst and not related to the other growth. It was an inflammatory reaction that is very common in dogs, especially with longer coats. Back home we went. That evening I noticed Chloe digging and scratching at her ear. I examined her ear and it was obvious that she had a bad ear infection. I tried cleaning it out and holding warm compresses on it because I did not have any meds and we would have to return to the vet again in the morning. Poor pup was so miserable. I held and tried to comfort her all night. Sunday morning when I woke to get ready to take her to the vet I noticed her making a strange noise and her whole body was convulsing. I tried waking her, but her eyes were rolled in the back of her head. Chloe had just had a seizure. I couldn't believe it and just felt so horrible for her. What a terrible week! Chloe and I headed back to the vet for the 4th time in 8 days. The vet took a culture of the discharge in her ear. It was definitely an ear infection because of the overgrowth of yeast. It was probably caused by the post-op antibiotics throwing of the yeast/bacteria balance. He looked at her paw as well. Chloe was given meds for the ear and paw. One of the meds would help with both the inflammation in the ear as well as the paw. We also discussed her seizure. He determined it was probably caused by the cumulative period of stress. It is not uncommon for high-anxiety dogs such as Aussies and Border Collies to have a seizure after a high or cumulative period of stress. It is something we would just have to be cognizant of. We were also able to find out the results of the biopsy which were negative, benign tumors. Whew! What a relief! I couldn't bare the thought of losing Chloe. Again, we headed home, armed with meds and would hopefully not return till the follow-up for the stitches. Within a few doses Chloe was doing significantly better and after a couple of days she got her spunk back!

Chloe's 2nd Birthday-May 25th

I am so glad that Chloe is on the mend because there would be no way that I could leave her sick in Indy while I would be in Boston. She is my fur-child and I need to make sure she is okay. I am just glad that she is feeling so much better. I hate seeing her in pain and sick. I only have a week and a half before I leave for Boston. There is so much left to do and yet, I am so anxious about another surgery. You think I would be use to it by now being that this one will be #8! I will be finishing my summer session a week early so I will be taking my finals, giving a presentation and turning in papers/projects before I leave next Thursday morning. Also, I need to prep and clean my apartment, pick up last minute items, clean, pack, and go to a couple last-minute doctor appointments. One will be to an ophthamologist because my "good" eye suddenly has periods of blindness or will be completely unfocused. I am worried it is related to my EDS. So, I will be having it checked this Friday just for my peace of mind.

Although my last few days prior to leaving are maxed with things to get done, I can not stop thinking about surgery. For the first time this weekend I thought about canceling it altogether. I get so anxious prior to surgery, but especially prior to major ones such as my RPAO and this FO. This is also more nerve-racking for me because this is a surgery to attempt to fix what was botched 2 years ago. This will also be different because my care team is aware of the EDS and consistent healing issues, but will also be having to deal with pain management problems because of the nerve hypersensitivity and the deterioration of my hip. I know I am in great hands with Dr. Millis and Children's, but I am still terrified. I know that my hip will never be perfect, nor will I ever be pain free but, it is hard because my case does baffle my doc and at best my hip may be 65-70%. This is a C-D grade range. I never liked anything below a B in school and especially when it involves my health! I also may need another surgery, maybe 2, to address additional issues. I will probably need to have a scope to repair my labrum again, but would be done locally with Dr. Maiers. That will be determined during recovery and how the hip heals. I will need to hardware removed after the bone heals, around a year minimum. This only addresses the right hip. During these last few years my left hip has had to compensate so much it has deteriorated. It is less stable, weaker, has chronic bursitis and consistent pain. This will need to be addressed within the next year because it is clear the scope is no longer helping the problems. This will be discussed during my pre-op appointment when we go over the game plan.

I am becoming increasingly more anxious as the days, hours go by. I was watching one of my favorite shows, House, and they were putting a girl to sleep for a surgery and the thought of that process for my surgery made my stomach flip. I have had moments where I don't want to do this; I don't think I can do this; Should I cancel? I have moments of doubts and wonder will this work? Should I cut my losses and quit now? I know part of this is anxiety and part of this is because I trusted a doc originally and it ended up disastrous. I know I will be in great hands, but it doesn't take away the history, the feelings, the pain. I just hope that this greatly improves pain and function. And I hope that I don't do this and then still need a re-RPAO or THR. That is probably my worst fear.

Late Night Thinking

It is yet another sleepless night with a lot on my mind. First of all, today is my pup, Chloe's, 2nd birthday! I can not believe she already is 2!! I have been looking through her puppy photos at how much she has changed and grown. She has been a true blessing. She is always happy to see me and is a comedic relief for any situation. She is always willing to share your food with you too ;) I have been through a lot over the last couple years and Chloe has been there along the way. She cuddles with you if your sad, is always happy and willing to play and loves me unconditionally. She doesn't care that I have scars or can't run anymore or that there are times when I don't have a lot of money to spend. She always loves me. I can't imagine how parents may feel about their kids because she feels like mine. I look at her or at a picture of her and I smile from ear to ear. She travels with me and this summer we are going to continue training for therapy dog. She is a great dog and I want to be able to share the joy she brings to me with others. Unfortunately, on her 2nd birthday she will be undergoing minor surgery to remove and biopsy tumors. I just noticed them on the side of her mouth this past weekend. They came up quickly because they were not there a couple weeks ago. I immediately took her to the Vet and he wanted to remove them promptly because they were concerning and recommended having them biopsied. I feel so bad because she is just a young pup! Of course, you begin to think of the worst-case scenario and the possibility of cancer comes to mind. We are hoping it comes back as an infection or virus or benign growth! I can't imagine life without my Fuzz!!

It has been crazy lately with spring semester ending, summer classes starting and preparing for my 8th surgery in Boston. Getting ready for this surgery in some ways has been no different with planning ahead, getting supplies and help in order and setting up all the necessary appointments, etc. But, in other ways it is also very different. This is the surgery to fix my botched PAO from 2 years ago. I will be in Boston at Children's Hospital of Boston with Dr. Michael Millis as my OS. He will be realigning my femur to help with proper alignment of the hip and leg and so that my femoral head fits better in the socket without having to break the pelvis again. I will have a pain team because of my nerve/pain condition and will be getting my first epidural as well as possible block to control the nerves. This is also the first surgery that I have the official diagnosis of Ehlers-Danlos Syndrome, so hopefully that will help in changing the way my incisions are closed so that I can heal better as well as a preventative PT plan that not only helps with post-op, but keeps all my joints in mind. My left hip and shoulder have been in a lot of pain lately because of taking a lot of weight of my right side through using crutches, etc. I have to be careful and protect all my joints, esp since my left hip still needs to be fixed and my left shoulder has dislocated in the past and is becoming more unstable. Prevention and strengthening are key. Of course, this surgery is also in Boston, so I won't be in my hometown of Indy which means my dad and friends won't be able to be there. It will just be me and my mom. Chloe will also be unable to be there. I will miss her so much. I am most anxious about the nerves and my pain level as well as how much this surgery is going to restore my hip. With my last scope I only had the possibility of being at 70% and will be lucky with this surgery if I get to that as well. It is very uncertain because of the complexity of the case what my outcome will be. At this time we are not addressing the labral tears. If the femoral head takes pressure of the labrum a further scope may not be necessary, but it is a possibility of having it scoped again in the future with Dr. Maiers in Indy. It is uncertain at this time what will occur.

As the days go by I get more and more anxious, but I also get excited knowing that this will change my hip and hopefully restore function and reduce pain. I know it will never be perfect or even close, that I will never run again, but I am hoping this will restore some quality to my life. This has been a long 2 years to get to this point and while most are done with both PAO's by this time, I will still be working on fixing the first. Waiting for Dr. Millis is worth it! 25 days to go...

May is Ehlers-Danlos Awareness Month

May is Ehlers-Danlos Awareness Month...

EDS is a rare connective tissue disorder affecting about 1 in 20,000. EDS affects connective tissue, which are tissues that support the skin, bones, blood vessels, and other organs. There are 6 subtypes that vary in severity from mild to life threatening. An unusually large range of joint movement (hypermobility) occurs with most forms, as well as some form of skin involvement. The loose (hypermobile) joints are unstable and prone to dislocations, chronic pain, and early onset arthritis. EDS causes fragile blood vessels and organs that can lead to ruptures and can also effect the heart. EDS has no cure or specialized treatment.

This is a great resource for information: http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

*Please do not use this as medical advice or self-diagnose. Please see you primary care physician or genetic specialist if you think you have EDS.


I have been aware of this disorder for a couple of years because of my bestie, Jessica Anderson, because she has EDS Type-3 Hypermobility type and mixed connective tissue disorder. I have gotten to know the terms, problems and have seen her go through some very difficult times. I have also been able to meet some incredible hipchicks that are also effected by this disorder, such as Jill Murphy. Most recently, Jill has been educating me, as well as others, and advocating for EDS education and awareness.

The more that I learned about this disorder I realized how much it related to me. I did some digging around and found out some more about my medical history, researched a lot of EDS and spoke to a couple of my docs. I have no family history of hip dysplasia, but did read that EDS patients are more susceptible to bone deformities and problems, which definitely made sense in my case. One symptom had always stood out to me was my skin problems. My wounds would take weeks to heal, they would tear open and form abnormal scars. I asked my OS, Dr. Millis, how likely it was that I have EDS and he wanted me to go see a geneticist because it was very fitting. I just had my appointment with the geneticist this past Friday and he confirmed that I no doubt had EDS Type 1 (moderate)-Classical type. Classical type has a lot more skin involvement that includes very stretchy skin, soft and velvety to the touch, poor and abnormal wound healing and abnormal scarring, as well as, some joint involvement, etc. It occurs in 2-5 out of 100,000 people. WOW! I was expecting the diagnosis, but there was things the doctor had explained that will effect the future and how I do things that I had not necessarily thought of. The diagnosis also felt like a puzzle piece that had been missing because of all the problems I had, but no answers as to why.

It has been a long couple of weeks with papers and finals, not to mention all the rain we have had which made the days so gloomy. It doesn't help that I slipped and fell last week nearly doing to splits. A majority of the weight went through my bad "right" hip. I have been in extreme pain since. I did go and see Dr. Maiers yesterday to look at my hip and although there are no new fractures, I very likely could have worsened the labral tear. I am suppose to let my hip rest which is nothing new, but is important since the fall. We are going to hold off on the MRI for right now. I have a lumbar sympathetic nerve block next week and donate a pint of blood the following week as well as get a baseline echocardiogram for my heart because of the EDS and surgery is next month! And of course, it will be a relief once this semester is over!

And The Date is Set!!!

The date of my 5th hip surgery has been officially set for Monday, 20 June 2011. I will be having a right intertrochanteric rotational osteotomy and Dr. Millis will be the performing the surgery at Children's Hospital of Boston. I will be having my pre-op appointments on Thurday, 16 June, with members of his team, Erin (PA) and Dr. Novais (Fellow). Then I will have a pre-admitting appointment to check blood-work, check vitals, speak with the anaesthesiologist, meet with my pain team. Since I have dysautonomia related to my nerves and their hypersensitivity, I will need extra care in managing pain and treatment. I will have 3 days in between my appointments and my surgery which I plan on spending touring Boston and SHOPPING!!!

My surgery is not a common one because femoral retroversion is not a common problem. Hip Dysplasia is about 1/1000, while retroversion or anteversion is 1/5000. I am also being tested for Ehlers-Danlos Syndrome which is a connective tissue disorder that can effect almost everything in your body. It seems highly likely that I have the classical type because of skin involvement and all the symptoms I have. I see the geneticist in 2 weeks so I will be able to get confirmation in regards to that issue. There is no cure for EDS, but having an official diagnosis will help with coordinating treatment plans to help manage the problems and give me the best possible outcome from surgery.

This has been a long road for me which started June 2009 with a botched RPAO by Dr. Scheid. At this point the PAO can not be re-done because it would perpetuate the arthritis and cause even more problems. At that time FAI cam-impingement and femoral retroversion were not caught, so although I had a PAO, residual problems were not addressed that resulted in a PAO fail. Two years later and I am still trying to fix the problems.

At times it makes me very sad and disappointed about the position I am in. Most recently it has been the roughest. I have dealt with more that I could have ever imagined. I was diagnosed with autonomic dysfunction or Dysautonomia. It is found a lot in EDS patients, but I will be seeing the geneticist about EDS in 2 weeks for confirmation. I have had my first lumbar sympathetic nerve block which helped in confirming that there is an issue with the nerves in my right hip and leg. I am having my second nerve block in about 3 weeks and should not need anymore after that. I had my second nerve injection in the front of my hip which should also help with the burning pain. I was also put on a beta-blockers to help with the anxiety. It is a whole-body approach to treating patients at the pain clinic and they try to do their best in giving overall care. I have to work on coping mechanisms and dealing with the anxiety for surgery. Not knowing can be very terrifying. Surgery is two months away and their is a lot left to work on with finals, summer classes, and my National Guard obligations, so hopefully I can stay busy and keep my mind off surgery.

There are others that have upcoming surgeries which include Jillian Murphy-shoulder surgery at Children's Hospital of Boston May 6th, Megan Hershey-rePAO w/ Dr. Clohisy May 16th, Marcie Pratt-RPAO w/Dr. Zaltz May 31st, Sami Straub-LPAO w/ Dr. Scheid June 7th and mine June 20th. There are a lot of hippie surgeries coming up. Good Luck Girlies!!!

True Warriors

This post is dedicated to some true warriors who exude strength and love...

As many of you know the creator of HipChicksUnite, Krystal Clausen, her boyfriend Joe and son, Dylan, have been going through some incredibly difficult times. Dylan was born on March 11th, 2011 and had his first heart surgery on March 15th, 2011. He was born with Hypoplastic Left Heart Syndrome and has been such a warrior, just like his parents.

I originally got to know Krystal through dealing with hip dysplasia and all that it involves. As a way to share information, promote support for others and raise awareness Krystal created HipChicksUnite. She led the way for awareness and creating a network for hippies with little information and support. It has now grown to over 600+ members from around the world!

I met Krystal, in person, August 2010 during Hippie Union. Dylan was just a tiny little peanut at the time! There was about 10 girls who came to share their experiences and stories, as well as information about our unique circumstances. Krystal was planning on her surgery until she found out she was preggos with lil Dylan. She was post-poning her PAO surgeries until after the birth of her little peanut. She still kept up with the site and supporting all of us. At 22 weeks, Krystal and Joe found out that Dylan had a congenital heart defect called Hypoplastic Left Heart Syndrome in which the heart anatomy is not correctly formed (simple version). Even though Krystal and her family were digesting the news and how it would affect Dylan's health, she still opened her heart to us by telling her story and documenting the highs and lows of her heart journey. Joe was there for her every step of the way, supporting and loving her and their lil peanut.

Krystal and Joe have been going through something that most people will never experience. I can not imagine what they are going through, but I know that they will be doing everything they can for Dylan. Krystal has been so strong and you can see that she has passed it along to Dylan because he is such a little fighter. I am so proud to say that I know such an amazing woman and hope and pray that Dylan gets stronger every day!

There are so many people that are thinking of this warrior family and praying, hoping and supporting them through this journey. Family and friends are those that are able to support you and be your strength when you don't feel strong and I know there is so much love surrounding Krystal, Joe and Dylan! They are TRUE WARRIORS!!!

Dylan - A Heart Warrior

Update!

These last couple weeks have been very difficult for me. I have had a lot of news to digest in regards to my health. Dr. Millis told me that I will need a femoral derotational osteotomy to fix my femoral retroversion. I did not even know that I had femoral retroversion until that point in time. I knew I had hip dysplasia and that my case was more difficult, but with the additional diagnosis it would only further complicate the surgeries and recoveries. He also spoke to me about getting a referral for genetic testing for a connective tissue problem because it is clear that something else is contributing to the problems. That was a very difficult phone conversation to have. By the end of the conversation I was speechless and in utter shock. Dr. Millis kept explaining different things, but I just couldn't believe that everything was happening. The tears just rolled down my face. Just thinking about going through a FO and it not being enough, then still having to do a RPAO for the second time. I knew this would take awhile to digest.

This past Monday, I followed-up with Dr. Maiers, my local OS per Dr. Millis's request. I wasn't expecting anything that I had not already heard from Dr. Millis. The appointment went as planned and he just reinforced what Dr. Millis said. He said that my problem was definitely very complicated and "way above his pay grade." However, unlike my bestie, Jess, I would not have the option of having the surgery here in Indy by Maiers, like she did because of the complexity and my routine post-op complications that I experience. He also agreed with Millis about a referral to a geneticist. There is clearly something else going on. Maiers did however approve of an alternative PT test for the Army. I would be allowed to do the bike event instead of running. This was a good part because at least I will be able to participate more in my unit and would allow for more job opportunities. I could definitely use a job with a decent income to help pay for all the medical and travel expenses.

Wednesday, I went to Meridian Health Group, the pain management clinic I am using, for a morning full of appointments. They had called me earlier in the week about my lab results and that I had a vitamin D deficiency. My day started with OT to help with different therapies and daily changes I could do to help with the pain and improve my daily functioning. Then I saw the nurse anesthetist for an injection consult. She suggested that I could get some different joint injections to help with the hip pain and nerve issues. I opted for a sympathetic nerve block under sedation. Later, I met with Dr. Wright, an interventional radiologist. He suggested to have a couple of nerve blocks first, then to do the sympathetic nerve block, because it would have a better result. I would do a block in the front of my hip first, then a week later a piriformis block in the back of the hip. I would allow my hip to rest for two weeks and then we would do the sedation and sympathetic nerve block. We got all of the injections set up to be done in the month of March. Next, I went to see the podiatrist to check on my gait, etc., to see if there were any adjustments to be made. My "bad" leg, or right leg was actually structurally longer in length. A temporary fix, was just to add a lift in my left shoe to help. It also is part of the reason I continue to get bursitis in my left hip from overuse. The final appointment of the day was a psych consult. I knew this part would be emotionally draining having to talk about everything that has happened, what I have lost, my stresses, fears, etc. My psychologist, Linda, and the head psychologist, Dr. Gleckman, couldn't believe how young I was and how many incredible things I have had to deal with already and what I would be continuing to face medically. It was definitely an emotional session. I try to put a happy face on, a cheerful façade, but it doesn't always work. They said that I am so strong and people tell me that a lot, but there are so many times I do not feel that way. It had been a long morning of appointments and I was spent by that point, so I headed home to finish homework before class.

I had only been home a couple of hours, when I got a phone call from my family doctor's office. The nurse had called to tell me that my Pap results came back abnormal and that I was being referred to a GYN to get a colposcopy and biopsies. I couldn't believe it! I almost immediately broke out in tears. I was so upset and had no idea how this could possibly happen. I am a health conscious person, had my Gardasil vaccine, yearly check-ups, etc., etc. Now, I have one more problem that I have to deal with. The nurse continued to explain what the abnormalities were. It is called low-grade squamous intraepitheleal lesions. LSIL are caused by the HPV virus, there are over 100 strains, and can also be referred as mild dysplasia. They are abnormal cells that are not cancerous, but can lead to cancer untreated. Some strains of HPV lead to plantar warts on the feet or hands. When I looked up the information it scared me because it was one of the groups of abnormalities that requires treatment and that can't just be watched carefully. Usually docs will run another regular Pap before referring to a specialist, but I was referred immediately, which completely freaked me out. I set up the specialist appointment yesterday and when the nurse asked for me to wait so she could check that the "procedure" room is available, I nearly lost it! She told me not to worry, that this happens a lot, but that was not reassuring at all. I just do not have that kind of luck, no matter how hard I try to take care of myself. When I got off the phone I broke down. I have been feeling so overwhelmed with just dealing with my hip & leg, but now I could be dealing with a potential serious and scary issue. I just don't know how much more I can take. I felt as if I was drowning with no way out. Just the words of "cancer" or "procedure" just sends me over the edge. I just think of all the procedure rooms I will be in, injections, testing, surgery, etc., has me so anxious and it makes me feel so anxious just thinking about it. I am so scared for what is to come and if I will be strong enough to handle it all...