A New Start...

It's time to reflect on the past year and set goals for 2012! Last year I wrote, "I may not be free of pain just yet, but it is a goal I have set for myself for 2011!" Unfortunately, I did not accomplish the goal of being pain free but I have taken more steps towards that overall goal. It is easy to say that that is my goal for 2012 as well. However, after learning more about myself and my disorder I have come to understand and have accepted that I may never be 100% pain free but I will do everything in my power to be as comfortable and as pain free as possible. It's all about the  mindset.

In the past year I have had 6 six surgeries. Some minor hardware removals, other reconstructive surgeries...including my RPAO. Thankfully my surgeries were combined so that I wasn't under anesthesia 6 times. There will be more surgeries in 2012 but hopefully not as many. I am still recovering from all of my 2011 surgeries. In February I will start back at therapy with Cam and will work hard to regain motor control and function. Better mobility is a major side goal. I also have more diagnoses and symptoms to deal with in the beginning of this year but I have plans set up to find answers.

I went back to school this fall and successfully completed my first semester back after taking a year and a half off. It was definitely a challenge but I feel very accomplished that I was able to push through despite discloations, therapy, and pain. I even made Dean's List! I am looking forward to a full year of classes this year. I feel 'normal' being back at school and going through a normal schedule.

I have learned more about myself, my disorder, my capabilities and strengths, and I have made adjustments to my life. I am blessed to have a wonderful and supportive family. I have an amazing group of friends who have been there for me during the rough times! Having a wonderful support system of family, friends, doctors, surgeons and therapists makes this all possible. I am blessed.

My 2012 Goal:
-Stay positive and keep living my life despite Ehlers Danlos Syndrome. Work towards living as pain free as possible by staying committed to my therapy.

I may live with an incurable disorder and face challenges everyday, but this doesn't stop me from living. I truly "live" with Ehlers Danlos Syndrome despite the challenges I face. I don't let my disorder define me and I don't hide behind it. I live each day with a positive and optimistic outlook and I try to "conquer" EDS...always remembering that there is someone who is fighting a tougher battle. This doesn't mean that I don't feel pain, but it puts my suffering and struggles into perspective. I am allowed to have my moments, but living in self-pity and talking about pain all the time puts a major spotlight on pain and struggles. That's emotionally draining and I just can't live that way. I don't want to focus on the negatives of my disorder. I want to focus on living my life...EDS just happens to be something I have to deal with. Remember, "you can't always decide what happens to you, but you can decide how you react."

So again...here's to taking a positive step towards a pain free life..one (very small) step at a time ; )! I hope that 2012 is a healthier and happier year for everyone.

Oh and to sum up 2011 in a few words... THE BOSTON BRUINS WON THE STANLEY CUP!

To get up in the morning only to know that you have to face another obstacle takes strength. To smile when the only thing you can do is cry takes bravery. To act happy and laugh when you know that times are at their worst takes courage. To be joyous when the only good news is the best of the bad news takes support. 

Positive thoughts to start off the New Year!

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Home Sweet Home

I am finally home...after 3.5 weeks of traveling around New England!

My ankle surgery went very well (according to my surgeon). I spent one night in the hospital. I was admitted to 10NW (my wing) and was happy to see many of my nurses. Thankfully my blood pressure (although very low immediately post-op) was stable when standing for PT. The pain wasn't horrible and was easily controlled with Tylenol. The best part was waking up with very little knee pain...something I was concerned about before going in for the ankle. I expected my knee pain to increase due to positioning in surgery. I was also concerned about the pain I had in my ankle pre-operatively but am happy to say that that pain has resolved. My surgeon examined the area during surgery and said that I likely have tendonitis due to the repositioning of the tibial tubercle in my knee surgery.  I can deal with that!

Unfortunately a little incident occurred when leaving the hospital. After getting into the car the door slammed into the bottom of my operative ankle. OUCH! Apparently my leg was not far enough in. Later that night the comfortable/minimal pain that I was discharged with was gone and replaced by a throbbing ankle that started to swell. I started losing sensation in my toes which was a sign that my ankle was too swollen for the cast. I called the on-call Ortho doctor and was instructed to elevate as high as possible. If that did not work he told me to come back to the hospital. I also e-mailed my surgeon to see if I could get a fast response (which I did) and he told me to come in if it didn't get better. Well, the next morning my ankle was still huge, I couldn't feel my toes and my ankle was throbbing so we went back to the hospital. The orthopedics department has an urgent clinic (in the same department) for emergency appointments. It worked out perfectly because my surgeon was the on-call surgeon and I was able to see him.

He personally assisted in recasting my ankle because he said he likes to do the positioning himself. Not many surgeons rip plaster and cast their patients. It's nice to know that my surgeons take patient care very seriously. However, the recasting process was so incredibly painful...I cried and screamed! I was asleep the first time it was casted so didn't have to experience the pain of a newly reconstructed ankle being positioned and manipulated. Thank God that is over!

He doesn't believe any damage was done to the ankle when the door slammed into it. However, it did aggravate it. I am still having problems with swelling but thankfully it can easily be fixed with elevation. The pain has been improving by the day. I am just hoping for no more set backs!

I am so happy to be home! I got to spend time with my boys last night. Mick and Roo kept me company and snuggled with my during the Celtics game! They are so special and I love them so much.

Roo keeping me company...
Isn't he the cutest?

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Here we go again...

Well, we are back in Boston after a wonderful Christmas with the Murphy family! I have right ankle surgery tomorrow. My surgeon will be performing the Chrisman Snook procedure. I will spend the next 4 months in some type of immobilization (and 8 months in the post-op knee brace). It is an inpatient procedure and I am expected to be admitted for 2-3 days. I am hoping to be admitted to 10NW this time as I want MY nurses. I would LOVE to be discharged Wednesday (1 day) but that usually doesn't work out in my favor due to blood pressure issues and pain management. Apparently Tylenol isn't considered to be a strong medication...who would have known? Anyway...we'll see if I can be discharged within 1-2 days. I miss my puppies, I need to see them and snuggle with them. As much as I love Boston (it is my FAVORITE place and one day will be my home), it's not my home just yet and I want to be home with my family.

I saw Marena and her parents today. It was fun catching up and reminiscing on our days as roommates for our PAOs...hysterical doesn't do it justice. I wish we had video of some of the conversations that took place during our inpatient stay. They are hopefully stopping by tomorrow to visit after her screw removal post-op appointment which was this September. We are also going to the Kenny Chesney/Tim McGraw concert this summer with our moms! Definitely looking forward to tailgating and country music...my summer would not be complete without a Kenny concert.

My ankle pain is still wicked bad. I am going to talk to my surgeon about it before surgery tomorrow and I am hoping that I wake up and it's gone. I obviously expect post-op ankle pain but this charlie horse pain has to go....it is not welcome! My leg is bruised, which is to be expected with such an involved surgery. My knee pain can be controlled with Tylenol....sometimes. However, sleeping is difficult and I haven't really found a comfortable position long term. The hotel has a chair with an ottoman so if the bed doesn't work I can sleep in the chair.

My calf is already very very skinny and my quad muscles have left for vacation and have not set a return date just yet! I don't start PT for quite awhile because my tibia and soon to be fibula fractures will need to heal before being cleared. This essentially means that Cam will have his work cut out for him (and me too) when its time to start regaining quad strength. We've been down this road before with knee and hip surgeries and it took me 8 months to get out of the post-op brace last time. My surgeons expect the same amount of time if not a little longer for this recovery.

I will post an update when I can...

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A Very Bruins Christmas

Happy Holidays!

...nothing better than spending the holidays with family!

Days 6-8 Post-op
Ankle pain is definitely getting worse and feels like a charlie horse that won't go away! No position is comfortable, heat and ice really have no effect...although heat may actually make it worse. Apparently my knee pain decided to get worse before getting better...it hasn't gotten better yet so I am hoping it starts to ease up in the next couple of days..especially seeing as I am going in for ankle surgery soon!

I barely slept the first night at my grandma's house. It's possible I was just over excited because the Bruins destroyed the Panthers 8-0, but if I had to guess I'd say it was my knee pain that wouldn't respond to Tylenol. I made the switch to the recliner last night and it definitely helped. However, I realized that I am not heavy enough to keep the recliner in an outstretched position. Every time I would spread out, it would collapse right back to upright...so I positioned pillows around my head and it worked out perfectly.

Last night we went to a Christmas Eve party at my Aunt and Uncle's house. I sat in the same chair all night and unfortunately was very uncomfortable. My ankle pain was horrible and I accidentally brought the wrong medication--meaning I felt sick towards the end of the night because I hadn't taken Neurontin. Nonetheless it was still a great time to be surrounded by family. And I got the Bruins pillow pet which I named "Bergy" after my favorite player, Bergeron!

Today I am at my grandmas house! We always celebrate Christmas at my grandmas. We had a lovely breakfast this morning and then opened presents. I asked for a Bruins jersey (obviously with Bergeron) and I opened it this morning! So excited..can't wait to wear it to a game with one of my Bruins scarves! I got a Bruins shirt, scarves and socks as well. It has been a very 'Bruins' Christmas...and the 8-0 win just makes everything better!

I am looking forward to seeing the rest of my family and eating lots of yummy food.

I hope everyone has a wonderful Christmas and/or Hanukkah!

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Incisions

***WARNING: This post contains somewhat graphic pictures***

Incisions labeled by procedure
5 incisions in total

...and yes, my leg really is yellow and it's not betadine...it's bruising.

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C is for Cookie

...that's good enough for me.

Day 5 Post-op
I woke up and my leg was completely turned out to the side (laterally/externally rotated). This is probably why I woke up with a throbbing knee. Unfortunately I really can't control my leg from externally rotating (passed normal range), but tonight I will try a different combination of pillows.

Another thing that has been bothering me is my ankle. From the moment I woke up from surgery the front of my ankle/lower shin has been really painful. I am not 100% sure as to why this is the case but one theory is that in traction for my knee surgery, a tendon or muscle was torn. I e-mailed my surgeon and will hopefully hear back with some more ideas or even reassurance that it is nothing to worry about. However, it is more painful than my knee (for the most part) and I haven't found any position, other than keeping it flexed, that helps...and I can't hold it in a flexed position all day.

Aside from my ankle pain, my knee still hurts but is feeling better everyday. The pain is wicked bad when standing up and I am having pooling issues again with the operative leg. When I stand up I feel as if my incisions are ripping open. Yesterday was a little better than today in that department but overall I am making progress. I only take Tylenol 3 times throughout the day, and this seems to keep the pain under control.

I am happy to say that I took my first real shower today! I no longer smell. Showers after surgery are rough for me. Not for pain reasons but because after a shower my bp drops and I feel syncope(ish). This happened today and lasted awhile. Thankfully I was sitting the entire time and was able to crutch to the couch when it resolved.

My mom and I baked boston sports cookies today for Christmas. Most people probably make reindeer, snowmen, and santa cookies but I decided to change things up a bit. I had a perfect image in my head of each sports team and the cookie I was going to design. Of course, it came out nothing like the image in my head and I had to simplify my designs as I was taking too long on each individual cookie (yes, I am a perfectionist).

Here are some of the cookies...(Boston Bruins, Boston Celtics, Boston Red Sox, New England Patriots):

Boston Red Sox
First Attempt
I improved on my outlining abilities...

Boston Celtics
First Attempt
My filling of the shamrock improved...

Boston Bruins (my favorite team)
Not how I had envisioned my cookie but it was too complicated to incorporate all the details... 

A collection of the cookies...
Patriots cookies included...

Tomorrow I will be making chocolate turtles and peanut butter blossoms with my Aunt! Making cookies around the holidays is always a good time!

Oh and I am excited to say that I finished my first semester back at school with a 3.66 and I made Dean's List! It was a difficult semester with pain, dislocations, PT and everything that comes with a full load of courses. I feel very accomplished that I was able to push through. Despite having 2 surgeries (one forth coming) this December, I WILL be returning for the spring semester. The next semester will likely be even more difficult but I have a wonderful support system and a fantastic disabilities director at my school. I can do it!

I hope everyone is enjoying the holiday season with friends and family! I still can't wait to see the rest of my family at the end of the week!

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Cookies for Santa

I was discharged yesterday (Monday- day 3 post-op). I saw my favorite Clinical Assistant, Cleanine, when Shane and I took a wheelchair tour of the hospital. Cleanine told me she will look for me when I am there for my ankle surgery! She's awesome. Shane pushed me around the hospital in a wheelchair...and what an adventure that was. I am pretty sure we ended up in unauthorized areas. When the pretty colorful walls disappear, that's probably a sign that we aren't supposed to be there! Anyway, we had some good laughs in the process.

I am in New Hampshire with family until the 23rd when we head to Connecticut. I can't wait to be with family. As I mentioned in previous posts, there is nothing better than being with family for the holidays and I would never do anything to have that taken away.

Day 3 Post-op
The pain was still bad. I took tylenol every 6 hours and really found no relief...but who would with over the counter medication for a fractured tibia and reconstructed knee? Thankfully I only had to go up 3 stairs to pass PT so I didn't really have to worry about my bp dropping in the middle. After PT we waited for my commode to arrive and then packed the car and headed to NH. The Bruins were the main focus of my night and I am excited to say that they extended their winning streak to 5 and beat the Montreal Canadiens!

Day 4 Post-op
Today is much better. I am still feel like my incisions are ripping open when I stand up and crutch but I got dressed by myself today. I also feel like the Tylenol is actually having an effect which means the pain is definitely improving. I was excited to wake up and watch NESN, a channel we don't get in PA but need! I also helped my aunt wrap presents while watching Charlie and the Chocolate Factory (the original) and now I am watching Family Feud. I may attempt a shower tonight as well but haven't decided if I am up to it yet!

Tomorrow is cookie making day! We are going to make Boston sports cookies and chocolate turtles! Tis' the season..

I miss my puppies Mick and Roo! I can't wait to see them in a couple weeks! (below are my 2 favorite pictures of the boys)

Roo

Mick

The boys will turn 2 years old on January 25th!

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You better not pout...

...I'm telling you why, Santa Claus is comin' to town!

I am still in the hospital. Due to an insane amount of surgeries on Friday, 10NW (my wing after surgeries) was filled to capacity. I was instead admitted to 10S, which is primarily transplant patients. I was so excited to see one of my 10NW nurses pass by the PT room. He even came to my room after his shift and we talked about my next surgery. He told me that 10NW will likely be "quiet."

Day 0-Surgery
I had an afternoon surgery and despite the insane amount of surgeries, my surgery was on time. I got to listen to Kenny Chesney in the OR. My surgeon warned me several times that this was going to be "very painful" and "comparable to a PAO." He certainly was not joking. WOAH PAIN! I also had a drain in my knee. It is expected to put out 30cc's of blood but I put out 120cc's...therefore, the drain could not be removed the next day! Darn. Key word on first day: OUCH!

*In recovery I saw both of my surgeons. They both felt the surgery went very very well. I have a post-op brace, cyrocuff, and huge wrap. When up and crutching (which has not happened yet) the brace has to be locked at 0 degrees. I am non weight-bearing for the most part as the bone is broken with screws holding it in place. When lying in bed I can unlock the brace...which is set from 0-60 degrees.

*My hip surgeon also took my RPAO screws out during my knee surgery!

Day 1- Post-op
OUCH! During the night shift I began taking Toradol and once that started working I felt so much better. However, the 2nd dose of Toradol stung like crazy going through the IV and eventually I started to develop some irritation and a bump at the IV site...it was time to remove! I don't do well with IV's--they usually either blow early, roll, jump, or disappear completely. Needless to say I was very happy to have it taken out, even though it meant no more toradol. I started taking Motrin and Tylenol around the clock. It's not really doing anything special...like reducing my pain! But this was something I am fully aware of before surgery. PT came to get out of bed but my bp was in the low 80s and dropped when sitting up. Orthostatic Hypotension is already a baseline for me so this is to be expected. However, this surgery has been particularly difficult with being able to get up for PT. Instead of getting out of bed, we just sat at the end. When moving my leg I feel like the incisions are ripping open!

The Bruins played the Flyers in Philly and as Jack Edwards said, "This. is. a. skunking." The B's won 6-0, scoring 4 goals in the first period. The Bruins are currently tied in points in the conference with the Flyers.

Day 2- Post-op
OUCHHHH! No more toradol. I am only taking Motrin and Tylenol. Today I got into a wheelchair for PT. Woah was that painful! We got to the PT room and I couldn't stand right away because I was feeling syncopeish (I made that up, but basically I felt like I was going to faint). Once I finally attempted to get up, I only managed a couple of steps (and by steps I mean caterpillar, toe rolling steps). In the middle of the parallel bars I felt dizzy and sick and had to turn around and sit down. That ended that PT session. I sat in the wheelchair for awhile to hopefully get more used to sitting upright but then it was pork chop time. The pork chop is a tub like thing that is shaped like...well, a pork chop...and it's used to wash your hair when you can't take a real shower. It felt great to have my hair washed. However, I had another PT session in the afternoon. Getting out of bed was a lot easier and I did most of the moving by myself, but again my bp dropped and I felt like I was going to faint so we sat down and went back to my room. In my room I took 3 steps with crutches and the therapist was convinced that I am comfortable on crutches when my bp is stable. I have another session tomorrow morning.

Pork Choppin' it

My drain came out today. Oh my gosh, that hurt so badly. The fellow said that most people are doped up on narcotics and therefore don't really feel the drain coming out. Well, I felt it, and it hurt. A lot. At least it's out now! That's progress!

I am hoping to be discharged tomorrow. I still need to pass PT but I know I am capable if my bp doesn't get in the way. I need to get out of here because I will be back for the ankle. I am ready to enjoy Christmas with my family (even if I am in a lot of pain).

Hope everyone has a wonderful holiday season!

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Don't Poke the Bear

I am happy and relieved to say that I have completed my first semester after a year and a half of surgeries. I finished my last final on Tuesday morning! Thank you to everyone for your support throughout the semester. To say it was difficult is an understatement but I pushed through and feel so accomplished!

I am in Boston for surgery! The first surgery is my right knee. I am having a Tibial Tubercle Transfer Osteotomy (TTT Osteotomy) and a MPFL Reconstruction (same procedure as left knee). I will probably be in the hospital for 3 days if all goes well and will stay with family in New Hampshire until Christmas Eve. We always celebrate Christmas in CT so it's convenient in that we don't have to travel back to PA after the first surgery and can spend more time with family for the holidays. There is nothing better than being with family on Christmas.

I will be spending most of the beginning part of this recovery in a wheelchair to hopefully preserve my shoulders for when I return to campus for the Spring semester. My right sholder dislocated several months ago on crutches and I spent 6 weeks in a pillow sling. I need my shoulder to support me because I would like to avoid having to use a wheelchair at school. However, if necessary the lift has been installed in my car and is ready if needed.

My head is not getting any better. I am scheduled for craniocervical manipulations in January. There is a study going on for Chiari 0 patients that shows that these manipulations can actually reduce the herniation. Hopefully this works for me too because I need these headaches to go away!

I haven't started weaning off of Neurontin yet, as pre-op told me to maintain the same dosage until after my surgeries. Although this is longer than I had hoped to stay on Neurontin it is understandable. I will start the weaning off process in January! My CRPS is controlled on 2400mg so I am hoping that it doesn't come back when I start to decrease the dosage.

Not much more to report on. Surgeries this month and then a long recovery! Need the surgeries to work on fixing everything else.

The Bruins have won their last 3 games and I was very excited that I got to watch it on TV last night as I was in New England. I like to believe that Bergeron (my favorite Bruins player)scored a good luck goal for me :)! And of course, if you're a Bruins fan, you gotta love Jack Edwards!

In the words of Jack Edwards, "Don't. Poke. the. Bear."
...and another one of my favorites, "How much wood would a Boychuck chuck?"

Love my Bruins!

I will post an update when I can! I hope everyone has a wonderful holiday season!

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Diamox

Only 1 more week of classes and 2 days of finals until I am free...oh wait--I have 2 surgeries this December...hmm never mind! But nevertheless I am excited to be finishing up with the semester. This will mark the first semester back after a year and a half of surgeries and recoveries. It felt good to be productive for a change, as I was used to lying around and being lazy. However, I am ready for a break...of any kind.

I saw my primary (PCP) this week and we discussed the Driscoll Theory and decided that it would be a good idea to try Diamox for my headaches. I posted a video about the Driscoll Theory and how it applies to EDS patients. Basically, the DT discusses the role of hydrocephalus in EDSers and how the neurological symptoms often times mimic Chiari symptoms. Now, we know that I have Chiari 0 (as confirmed on a MRI), but it is possible that if I do have hydrocephalus (abnormal accumulation of cerebrospinal fluid in the brain), the pressure could be what is causing the Chiari herniation. However, after taking Diamox for one day I can say with confidence that I will NEVER take it again. I experienced horrible withdrawal/hangover symptoms for 2 days (after only 1 dose) and had an out of body experience. On my way to class, apparently I stopped off at McDonald's for sweet tea. However, it wasn't until I was sitting in class with my sweet tea that I even realized I went to McDonald's. To make this even more interesting, I couldn't tell you what McDonald's I stopped off at as there are at least 4 on my way to school. So yeah, not taking Diamox anymore. For those of you who follow my blog regularly, you may remember that I had similar reactions (out of body experience, and withdrawal/hangover symptoms after 1 dose) when I took Dilaudid--maybe I should stay clear of drugs that start with "Di".

So we are back to square one. I do not know what the next step is for my head in terms of possible medications. I am really not a fan of taking meds but I was eager to try Diamox---many have described it as "life changing." I see my primary on Tuesday and will hopefully have another plan. I am supposed to be pursuing craniocervical manipulations but with surgeries coming up, I have no time and I was told it could take 3 months to get in for a consult anyway. Unfortunately, my head is getting worse and I have no direct path at the moment. 

As I mentioned in my previous post, I will start weaning of Neurontin to take Lyrica. I have been experiencing short-term memory issues and this is likely due to Neurontin. I will start on Monday! I am not going to update on anything else because nothing has changed. I am waiting for my surgeries to fix my right leg. I will start back at therapy in February (or whenever I am cleared). 

I would like to share with everyone that the Boston Bruins went 12-0-1 in November! What a statement. They did not lose a game in regulation and jumped from dead last in their division and conference, to first in the division and second in the conference. Here's to a successful month of December! Go B's!

Last night I watched the Extreme Makeover-Home Edition which focused on bullying. The story was very moving (I cried throughout most of the 2 hour episode). The Walker Family lost their 11 year old son (and brother) to suicide following abusive bullying at school. I just cannot fathom how some people can be so heartless and insensitive that they think it's okay to verbally (or physically) abuse other people. What do you gain from that type of behavior? How would you feel if you learned you were the reason someone ended their life? I signed the pledge to "stand together" against bullying. If you are against bullying of any kind, I suggest you sign the pledge as well. Together we can help prevent families from having to go through what the Walker Family has had to experience. (For more information click here) 

Photo Credits go to Extreme Makeover Home Edition

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