Friday, March 28, 2014

Scapular Muscle Reattachment Surgery

Just a heads up to those that are a bit on the squeamish side, there are 2 graphic pictures showing my shoulder blade during surgery. It is a picture of before and after the repair. 

The flight home from California wasn't as bad as I feared it would be. The Quadrilateral Space Decompression surgery honestly didn't really hurt that bad; I'm used to far worse that this surgery was a walk in the park. I only had to wear the brace full time for a week and during week two I could start weaning from it. The only time I had to wear it was when I was sleeping. Once we got home, I was back in school a few days later. I caught up really fast but unfortunately just about 2 months later I was informing my teachers once again that I would be missing school due to surgery and that I would miss 2 weeks of school right off the bat. As usual I got the looks of concern and the talk about how I might want to drop my classes. I pretty much laid it straight and told my teachers this was going to be my 19th surgery and I will get all my assignments/quizzes/tests all done on time. If I feel I am struggling, I will come to them and talk about it.

3 days after quadrilateral space decompression surgery
November 1, 2011 was not only surgery day for me, but it just so happened to be my mom's birthday too. Talk about a not so fun Happy Birthday Mom! Nothing like getting to spend your birthday in the hospital waiting for your daughter to come out of surgery and then you get to take care of her. My goodness did I feel guilty.

When it was time to go to the surgery center for surgery on my left scapula (shoulder blade) you have no idea how much I was absolutely dreading it. Even though there was a little bit of happiness to just get it done and over with, at the end of the day I just did not want to deal with recovery. This was the 4th surgery in 2011. The recovery is so hard, my body was tired, and I knew what I was getting myself into since I had just had this same exact surgery a year prior. The scapular muscle reattachment surgery with the muscle transfers are way more painful than the standard way. My entire torso has never hurt me that much before.

Once I was wheeled back to the operating room and scooted onto the operating table, I laid on my back and saw a white board on the wall. On the board were the names of all the patients for the day as well as what procedures they would be having done. I found my name at the top with left scapular muscle reattachment written next to it. I remember laying there thinking, "right now is the best I am going to feel for the next several weeks...ugh". Within the next few minutes the anesthesiologist came over by me and put a mask over my nose and mouth. At first I was breathing just pure oxygen but then all of a sudden I could smell the anesthetic that was going to put me to sleep. I hate that smell. The anesthesiologist then told me the same thing all of the other anesthesiologists say, "Take deep breaths. We are going to take good care of you. You have nothing to worry about." At that, I felt my eyes getting heavier and heavier. Surgery then began.

The white part is my scapula. There should be muscle attached there. 

Can't see my scapula anymore! YAY!
This surgery revealed that my rhomboid muscle and serratus anterior muscle transfer had in fact retore. Dr. B fixed this in the same fashion as he has done previously. Several sets of drill holes were made into my scapula and then a bunch of sutures were used to sew everything back to the bone. He also tweaked up the things he thought needed tweaking along the medial side of my scapula (closest to the spine). To this day it still boggles my mind that I managed to retear my muscles just because I became sick and was throwing up 11 months prior. When that happened I was 6 months out from having the same exact surgery. No wonder my shoulder blade was killing me like no other on that night. It also explains why I looked absolutely dreadful when we went to the emergency room. To this day, one of my biggest fears is throwing up just because of all the stress that would be put on my shoulder blades.
Once you come to in recovery it is not very fun. A lot of pain. 
This explains why it is not very fun and hurts a lot.
Every single time you sit or lay down you are putting
pressure on the incision and newly reattached muscles.
As much as this surgery is a pain to deal with, the good news is the days do go by and slowly but surely and the heavy, heavy pain will start to ease. Ice is your best friend for the first several weeks. It will help with the swelling and it gives a little relief. With the big bulky brace, honestly, it will be a love hate relationship. You hate it because it's big & bulky, hard to get comfortable, you have to sleep in it, and it's not the most attractive thing on the planet. At the same time you will love your brace. My two main reasons why I like it is one: it is a warning sign to others so they don't bump you and two your shoulder is so weak you will be thankful that you can let the brace do the work for you by supporting your arm.

As far as school goes, I did not end up dropping my classes. During recovery when I wasn't sleeping. I was attempting to do homework and study. It wasn't easy but in the end I managed to get an A in my statistics class and an A in my speech class. All the hard work paid off in the end and I was proud of myself. I also got lucky because my next surgery for my left shoulder ended up after the semester ended which meant no studying during recovery! Yay! That's always a plus. 

This scapular muscle reattachment surgery unfortunately is in my future again. I need to have it done on my left shoulder blade. Originally I was going to do it first but I've decided to postpone it because my right shoulder is trashed, not functional and a million times worse than my left. I can't imagine the shape my right arm would be in after being the dominant arm for a couple months. 

One of my friends sent me this quote and I think it is very true and a good note to end on: 

Thursday, March 27, 2014

Quadrilateral Space Decompression Surgery

In June 2011, after arriving back home in Illinois after my follow-up appointment with Dr. B in Kentucky, I scheduled an appointment with Dr. K. The pressure that I had building up in the back of my right shoulder joint was no longer there since something had popped when I went to reach for something a few days prior. Instead of having the pressure build-up type pain, I was having sharp/catching pain because I felt like there was something getting caught in the joint. When I saw Dr. K he evaluated my right shoulder and ordered an MRI. The MRI revealed my capsule was stretched out all over again, there was a loose suture anchor inside the joint, and my shoulder was subluxated posteriorly. Which means I have posterior shoulder instability...again.

After these findings were discovered, I contacted my doctor in California and doctor in Kentucky. It was decided that surgery should be done to the stabilize the right shoulder first before the quadrilateral space decompression could take place. This is because the quadrilateral space is in the back of the shoulder and I was really unstable out the back. If we did the decompression first, there was very high likelihood surgery would fail because of the instability. So in July 2011 I had surgery by Dr. K here in Illinois. He did an open capsular shift to stabilize the joint and to get all the loose sutures out of the joint as well. As usual, recovery was no walk in the park, but at least I was off of school for a few weeks so I didn't have to worry about homework.

Come the end of August, I was signed up for a couple classes. Nothing to terrible; just statistics and speech. I didn't want to sign up for more because I knew I would be having at least 2 surgeries that semester, possibly 3. About 2 weeks into the semester, I was letting my teachers know I would be missing a week of school because I would be having surgery out in California. As usual I got my assignments ahead of time and got as much done before surgery.                                          

On September 11, 2011, my mom and I flew to California. It was pretty surreal. Less than a year from that time, I was being told by an evil doctor in St. Louis that there is nothing wrong with me, I'm attention seeking, and my mom and I need a psychiatrist. Within the next 2 months I had found a doctor, met with him, was diagnosed with quadrilateral space syndrome, and told surgery was needed to decompress my axillary nerve. Yet again another example of why you need to listen to your body and be your own advocate. If I had listened to the St. Louis "doctor" and not done my research Lord knows how long this would have gone undiagnosed.

While we were in California, we couldn't have asked for better weather. The day before surgery we were able to explore a little bit since my pre-op appointment was early in the morning. This was the first time I had ever seen the ocean in person. Listening to the sound of the waves crashing against the rocks is a sound I don't think would ever get old. It was so peaceful.

My mom and I went to a little town in Pescadero, CA.
While eating lunch on the beach all of a sudden a bunch of birds
got very close and started to swarm us.  I didn't have to zoom
on the camera to get a picture of this bird. My mom doesn't
like birds that close to her. I got a good laugh watching
her reaction. 

The Pacific Ocean

September 14, 2011 was surgery day. The day I'd been waiting for for several years. Everything went really smooth until I started to wake up in recovery. I woke up laying on my right side (the side that had surgery) because my left scapula (shoulder blade) was killing me. The nurse kept telling me to lay on my back since I just had surgery on my right shoulder. I told her I can't because my left scapula is shifted out of position and my right side doesn't hurt. She then told me I didn't have surgery on my left scapula I had surgery on my right. I then told her with my medical lingo, "My left scapula is subluxated superiorly and laterally. I need someone to move it back. In order to do surgery on my right shoulder I had to be positioned on my left side and my scapula is now out of position." She looked at me with eyes wide and mouth agape and asked how I knew that. I told her this has happened to me too many times to count. The nurse then went and got one of the other orthopedics to come evaluate my left scapula. I told him the same thing I told the nurse. He then asked me if I was in medical school. I told him no. He then said, "How do you know all this". My reply, "I just do!" haha This doctor ended up going to get Dr. T out of surgery to come figure out what is wrong with my left scapula. They took x-rays but they were normal. I told everybody it will be normal; it never shows. Keep in mind while all this is happening, I'm still waking up from general anesthesia and have a bunch of pain meds being pumped into my IV. I was getting aggravated with my doctor because I knew what had to be done to get my scapula back in place but nobody would manipulate it for me. I remember I even told Dr. T to go call Dr. K in Illinois to learn how to get it back. Dr. T said no. Then I told him to go get a syringe, fill it with marcaine, give it to me and I'll inject the medicine where it needs to go myself. Dr. T said no again. This banter continued back and forth for some time. My mom ended up talking to Dr. T on the side explaining to him what he can and can not do to shift my scapula back into place. Dr. T came back by me and told me he will try to adjust it. I think he gave me a shot of versed (amnesia medicine) because he told me you might not remember this. Well I did. He lifted my left arm, put pressure on my scapula and all of a sudden it made a pop and went back into place. Dr. T's eyes opened wide and quietly to himself he said, "It popped!" I looked at Dr. T and said, "Thank you. I told you so". From that minute forward I was absolutely fine and talked about hockey with the nurses. I was discharged from the hospital a couple hours later and all things considered in pretty good shape.

This picture was taken on a separate occurrence, but this is basically what
I woke up with in recovery after surgery. I think it's pretty self-explanatory
of why I couldn't lay on my back without a ton of pain. 
I've come to the conclusion if you have to have surgery you may as well recover pool side in a lounge chair!

Not a bad way to recover
As usual strutting the Blackhawk pride :) 
At my post-op appointment a couple days later, the first thing I did was apologize to Dr. T for talking to him in more of a strict tone. I told him that is not my character whatsoever but I was killing, I knew what was wrong, and I knew what had to be done to fix the problem. Dr. T told me there is no need to apologize. You were in an insane amount of pain. I don't take what my patients say personally. Happy to say ever since I had this surgery I'm yet to get the crazy sharp pain down the back of my arm. When things were going well up until this past year and a half, I was able to get my arm past 45 degrees doing flexion (bringing arm in front of you). This surgery helped so much. Here's a link if you want to read more about Quadrilateral Space Syndrome. Quadrilateral Space Syndrome Info

Now that this surgery was over. I had a couple months to do rehab and then it was off to Kentucky for left scapular muscle reattachment surgery. 

This picture was taken like 2 maybe 3 days after surgery. I've never felt that
good after a surgery before. It sure put joint surgery and decompression
surgery in perspective for me. I would take decompression surgery ANY day
of the week.

Sunday, March 16, 2014

Results From Pennsylvania

Well, we made it home safe and sound from Pennsylvania. The weather behaved and we didn’t run into any troubles which is a very good thing. Normally we have a couple hours to site see but not this time. It was strictly medical. We spent 6 hours at the doctors’ office on Thursday; an hour and half waiting, two hours with the physician’s assistant, and three hours with the doctor himself. The next day we spent two hours with the therapist. It was a relief not being rushed; especially since my history is complex. The visit with the doctor from a diagnosis perspective was very successful. It is such a relief to finally have answers; especially when I’ve been saying for 18 months something is not right and I can pinpoint the day the problem occurred. Hopefully from here on out we will be able to figure out a game plan for treatment now that we have a HUGE piece to the puzzle.

The ultrasound was not as painful like I feared it would be. The doctor was extremely gentle with me and I ended up with just a standard ultrasound because I don’t have enough motion to do the movement one. The doctor told me even if I did have the dynamic ultrasound done, it wouldn’t make a difference because the problem could be seen with slight motion at my side. The ultrasound revealed I have a lot of inflammation around my brachial plexus (bundle of nerves that send signals from the spine to the shoulder, elbow, & hand) and my brachial plexus is all scarred down. It is also getting completely compressed between my scalene muscles (muscles on the side of the neck). When I go to move, it shows there is no space at all for the nerves to move. I don't remember the exact location, but the doctor said the nerve was "popping out" because there is no space. It appears the bodies natural response is to go into overdrive and heal itself when trauma occurs is not necessarily a good thing. The scar tissue that has formed is preventing my nerves from being able to move. They are stuck. I’m waiting for the official report but I’m pretty sure he said I have thoracic outlet syndrome and brachial plexopathy. When you add these nerve problems to the scapular dysfunction, instability and chondrolysis in my right shoulder, you get one very messed up shoulder joint.

As far as treatment goes, that one I’m not sure of yet. I emailed my doctor in Colorado and I am waiting for a response. The doctor I saw the other day uses alternative modalities of treatment and I don’t understand how that’s supposed to get rid of the scar tissue that is clamping my nerves down and get me better.

In the meantime, there are a few things that I can do to help my symptoms. One is to wear my brace whenever I’m standing and prop with pillows whenever I’m sitting. This will help reduce the stress on my nerves, shoulder and neck because the weight of my arm will be supported. I was given a device called a high voltage unit which has been programmed with 3 different settings. One of these settings is to help increase circulation and reduce inflammation, another for muscle spasms, and the last one is to help with pain. I think this will be beneficial.

This diagnosis explains so many of my symptoms. Nerve compression is not a good thing to have. It explains the sharp pain into the back of head, why my neck has been hurting, why I can’t lay on my stomach, why I can’t turn my head without discomfort. It even explains why it hurts to walk. Holding that upright position that you have to do when you walk is compressing my nerves. It explains why it hurts to write/type/draw after a very short amount of time, it explains the burning/sharp pain over my shoulder and up the side of my neck into my jaw, ear, & side of face, it explains why my shoulder freaks out when it is moved past its “safe range”, it explains why my shoulder starts to shift forward and the muscles spasm like crazy, it is also a contributing factor explaining why my motion is so limited. The reason my motion increases with my neck bent is because there is space for my nerves to move.

Thank you so much for the positive, happy comments that I’ve received. They are very uplifting; especially on a very stressful week like this one. They do more than you realize. I can’t begin to say how relieved I am to finally know what has been interfering with my ability to get better over this past year. For the first time in a long time, I’m a little optimistic that I will be able to gain more motion and gain a little more independence once we figure out the best course of treatment for me.

There's 9 days left to order your Hypermobility/Ehlers-Danlos Syndrome Awareness Shirts. May is HMS/EDS awareness month. A portion of the proceeds will be donated to the EDS National Foundation. HMS/EDS Relief Fund for Megan

Saturday, March 8, 2014

Heading to Pennsylvania

I'm sorry for being absent from the blogging world. It has been quite a busy month with a change in plans...again. I ended up going for the MRI of my neck. It did show I have arthritis and a few mild bulged discs but it doesn't show anything that explains why my motion increases when my neck is bent. The doctor I saw was very nice and everything but he didn't really have any suggestions. Which means I had to use my resources and do my own research.

One of the pluses about blogging and sharing my story with others is that I have been fortunate enough to have gained a few "email pals" all over the place. It's one of those things that would have never happened if I didn't have any medical issue. It's funny because I have not met any of my email friends face-to-face but there is still a supportive "bond" because we all share at least one thing; an understanding of what it's like to have a bad shoulder.

With one of my shoulder pals, she had mentioned she had a dynamic neuromusculoskeletal ultrasound done. This is a specialized ultrasound that views the nerves, ligaments, tendons, etc. while the shoulder is in motion. It sounded very interesting and something that could potentially be very beneficial for me; especially since my problem is when my shoulder is moving. Every test I've ever had done requires my arm to be still. I told my parents about the test and needless to say they were intrigued; especially when the 2 pictures below demonstrate what happens on a weekly basis for no apparent reason. It is not fun and it doesn't feel very pleasant either.

There are many days where I wake up like this for no reason.
My muscles clamp down and everything gets all out of whack.
This particular episode happened last weekend.  I was
locked this way for 48 hours unable to bring my arm to my side. 
Hand discoloration that occurs every time. 
As I did my research, I came across a paper that had two email addresses of the doctors that do this ultrasound in Pennsylvania. When I spotted those addresses, I got so excited and scribbled them down immediately. I decided to compose an email of my symptoms, pictures of my motion with my neck bent versus neutral, and ask if they knew of anyone who does this test in the Chicagoland area. There is something so bluntly obvious going on but we haven't been able to pinpoint what it is yet. My mentality when I compose these types of emails is, I have nothing to lose and the worst thing that is going to happen is I won't get a response. Fortunately, 2 hours later I had a response!!

Attempting to do a punch-up. It has only gone this high for 18 months.

Doing the same punch-up. Only difference is my neck is bent.
Straight-arm raise. Past 18 months this is as high as it goes.
Holy cow! Bend my neck and I can move!! Who'd a thought?

Unfortunately the doctors in Pennsylvania did not know of anyone who performed this specific ultrasound test in our area. As I told my parents, the East coast is feeling left out because we haven't been there for medical treatment! This week my mom and I will be traveling to Pennsylvania to meet with the doctor and have the ultrasound done on Thursday March 14th. Based on the information I sent, the doctor thinks there is a problem with my brachial plexus and will be evaluating me for a condition called thoracic outlet syndrome. We will be there Friday as well because the doctor may want more detailed imaging of my thorax and shoulder. I'm very anxious and at the same time scared for this upcoming appointment. I'm scared because it is going to more than likely kill because my motion will have to be forced and my shoulder has a mind of its own and freaks out. I'm also scared for the test to come back "normal" because something isn't right; however, I just have this gut feeling that where we are heading is where I am supposed to be. When I contacted my doctor in Colorado to see what his opinion was his response was, "I am in favor. The more info the better; particularly with your shoulder and neck issues!!" It would be devastating to find out in rehab after the reverse shoulder replacement I still can't move because it's a nerve issue and not strictly a bone/joint problem.

In case you didn't know May is HMS/EDS (Hypermobility Syndrome/Ehlers-Danlos Syndrome) Awareness month. I created tshirts to raise awareness. We need a minimum of 30 orders for the shirts to be printed. They are $15 each plus shipping. So far we are over half way there!! This is the link to the shirts. HMS/EDS Relief Fund for Megan
I will be donating a portion of the profits to the EDS National Foundation. EDS National Foundation

Sunday, February 2, 2014

The Gut Feeling is Back 2014

Isn't it interesting how some weeks of our lives you wish you could relieve over and over again, while there are others you just can't wait to end. For me, this past week started off really good but as the days went by things started going south. Sunday, Monday and Tuesday were a lot of fun. My nieces and I had a sleepover in my room where we shared stories and laughed. Since they were home from school due to the weather, my mom and I were able to do some fun stuff with them. We took them to see the movie Frozen and they helped out making homemade pizzas, tortilla soup, and cookies. Both my nieces are at the age where you can supervise and let them cook. They both learned there is a lot more that goes into cooking. It's not like we press a magic button and food magically appears on the table all prepared. We played games with them and it was just a nice, calm couple of days to spend time with them.

Then the middle of Monday night hit. It was a normal tossing and turning nights sleep. But for some reason I moved my right shoulder off my side and realized it moved higher than normal. I moved it again and the same thing happened. That's when I paid closer attention to how I was laying and realized I had just possibly made an important observation. I've been saying for several months my neck is hurting me. Everyone keeps telling me it is because of the muscle spasms that I get due to the muscles in my neck overcompensating for the ones in my shoulder. I know the muscle spasms are a contributing factor but I really don't think it is the underlying cause of the neck pain. I don't know how to explain it other than it's this gut feeling that I've had so many times over the past 8 years that I've learned to listen to.

As I watched the hours go by on the clock all I kept thinking was, "Come on! Be morning already. I have to show my parents my arm motion with my neck bent forward". I'm one of those people who can't turn their mind off when they think they've discovered something. I keep a notebook and pen on my nightstand and write down notes as I think of things throughout the night. It sounds kind of weird but a lot of times I have dreams of being at the doctors office and in my dream I'll ask a question that I should find the answer to. My brain is on the go 24/7 so I write things down so I don't forget. So come morning, I showed my motion.

In the pictures below you can see the difference between my motion with my head neutral and head bent. All motion increases (except flexion; not pictured) September 21, 2012 was the last time I was able to move my right shoulder that much without insanely sharp/stabbing pain over the front of my shoulder. It might not look like a lot of motion, but in my world it's a ton.






As you can see there is quite a difference in motion. Now the question is WHY? Honestly, I don't know. I've had no imaging of my neck so I don't know if there is any issue there. I'm seeing my physical therapist tomorrow to have him evaluate things. I already sent these pictures to my doctors and I'm waiting for a response. 

Then comes Wednesday January 29, 2014. Things were about to change; for the worse.  I was sitting on my bed coincidentally emailing my surgeons my questions about my motion and telling them I was considering postponing things on my left shoulder at this time and just focusing on the right. I was wearing a soft collar neck brace just to hold my head in a better position as I typed. My neck started getting stiff so I took the neck brace off. Then just like that for no apparent reason, I turned my head to the left, felting something odd at the base of my neck, followed by VERY sharp/stinging-like pain over the top inside portion of my left shoulder blade. I put the neck brace back on because I couldn't turn my head at all without this sharp pain. I couldn't bend over, bend to the side, sit comfortably or anything. The most comfortable position was laying on the floor, on my back and not moving. Originally I thought I pinched a nerve but as the day went on, the sharp/stinging pain I had began to subside. Instead of noticing the sharp pain, I realized there was a problem with my shoulder blade. It was sitting higher than usual and there was this depression/divot over the top portion of my incision. My gut feeling is my muscle ripped. I've had that sharp/stinging pain sensation before. The last time I had it was when I slipped down the stairs and retore my muscles off my shoulder blade.

My left shoulder blade (right side of picture due to the reflection in the mirror)
has a very apparent line at the top. This depression/divot has been there since Wednesday.
It is VERY tender to have pressure put on it. 
Left scapula is winging a lot more than normal. Before just the bottom used
to wing out. If you look at the top though, my scapula is winging up top too.
That's where I felt the sharp/stinging pain and where I think the tear happened. 

Thursday January 30, 2014 was rather uneventful. I had to take my muscle relaxants to try to get my muscles to calm down so my left shoulder blade would sink back into position. I called Dr. K's office but his clinics ended at 10am and I called at 11:15. Go figure, right! 

Friday January 31, 2014 rolls around and it was a long day from the get go. As soon as I opened my eyes I knew there was something going on with my right shoulder. I had a burning sensation up the right side of my neck and I was hurting more than usual. When I stood up I noticed my shoulder was subluxated out the front and I couldn't move my arm. It was locked. By 1:30 in the afternoon that day, I had subluxated 3 times simply by doing nothing; unless you consider waking up, flipping a pancake, or grabbing a cup as a reason to subluxate. After the third time, that was my cue to just sit all day with the heating pad on and not move my arm the rest of the day.  

Not a pleasant way to wake up. You can see my shoulder is sitting much higher
than it should. It's hard to describe the sensation that occurs when there is
all that pressure on a graft in the front of your shoulder doing its job by
preventing you from dislocating. 

My arm gets locked at this angle until my shoulder goes back into position.
It's definitely not the most attractive thing in the world.
At the end of a long week sometimes all you can do is be thankful that it's over and be hopeful that the following week will be better. I'm hopeful that this week I will get some questions answered and if anything be given some sort of guidance in which direction to move. Whether that be going for testing, meeting with a doctor, or staying on the same course of treatment. I still haven't gone for the botox injections. I'm still rather reluctant since nobody can give me a clear concise answer with what to expect. It's a hard scary decision to make when you know you already have an underlying connective tissue disorder. At the end of the day, I have to listen to this little voice inside my head that hasn't steered me wrong yet over all these years. It's important I listen to it because after all it's my body and I'm the one who is going to have deal with whatever happens to it at the end of the day.

Even though my shoulders are killing,
sometimes all you can do is smile, put on a brave face,
and believe you will get through this. 

Friday, January 17, 2014

How Do You Deal With Pain?

Over the past couple weeks, I've been contacted by some very nice people who have read my blog posts. One of the questions that keeps coming up is, "How do you deal with your pain?" My initial answer is always just take it one day at a time. This is true because I can feel different every day; however, the more I think about this answer, the more I realize it isn't really that helpful. I've been pondering this question a lot over the past few days. Below are a few things I do to deal with the pain.

I am in no denial that my situation kind of sucks and can hurt like hell on certain days; however, watching someone you love go through chemo and radiation treatments for their cancer, makes you view things with a different perspective. I guess you can say my compass is set differently. There is never a day where I don't hurt. My pain can change in severity and vary in location every day; however, it is not going to kill me. It is helpful for me to think of dealing with pain almost like a competition. The competitive mindset I had when I played soccer is still with me. Instead of being geared towards the game, it is geared towards all the various medical issues. In my head I think, who is going to win? Am I going to take control over the pain or am I going to let the pain control me. Some days I win and some days the pain wins. Depending on what level of pain, determines what activities I will participate in that day. It's really important to listen to your body and not cause further injury. At the same time, it's important to learn how to go about your day even if you hurt. With me, it's important to do some amount of exercise every day to keep my other joints strong.

If you want to maintain any amount of independence, it's important you learn how to modify various things. I've been doing this since the day I became injured in 2005. I am very stubborn about giving up any of my independence. My mind definitely has to think outside of the box in order to get tasks done. If that fails, then I will ask for help. I've been modifying tasks for so long that I don't think of it being any different than a "normal" person. I had to sit and really think about what activities I modify. Honestly it's everything. To name a few, I use my legs and my feet a TON. If I'm sitting on the couch and the person next to me says, "Hey, set this over there" they will put it between my feet and I will set it down that way. If I want to make a smoothie, I will climb up on a chair because I can't reach the top of the appliance. I get dressed/shower dangling over at the waist because my arms can't reach my head. I use straws in water bottles to get the last bit at the bottom because I don't have enough arm motion to raise the bottle to the correct angle. When people shake hands with me I don't extend my arm out. I will bend forward at the waist. The only time these modifications become more apparent to me is in a social setting outside of my home. This is when I really notice that I do things different. My family and I don't give it another thought. It's our normal.

My mom offered to help me make my smoothie but
sometimes it's harder to ask for help instead of doing it myself.

Modifying at its best. My nephew Justin is too heavy
for me to hold with my arms. In order to hold him, I sit on
the floor and bend my knee to support him. There is zero
stress/strain on my arms. 
Find a hobby/interest to use as an outlet. This is my saving grace every day. It is important to find something to distract yourself with so you don't think about how much you are hurting. Drawing and writing are my personal primary outlets. I can put music on while I draw or write and concentrate strictly on the task at hand. For some people they might gravitate towards reading, sewing, painting, watching a movie etc. Over the past week I've been experimenting trying to find the most comfortable position to draw. I've found I can't draw at a kitchen table, on the floor, on a bean bag, on the couch etc. I did find if I sit in our new recliner I can prop well enough to draw for short intervals at a time. If you are a chronic pain sufferer, I think finding a hobby is extremely important to help get you through each day.

I'm happy to have found a decent comfortable
position to draw even if it is for short intervals
at a time. It's better than nothing. 
Communicate with people. It can be done in various ways. There's one-on-one communication, email, phone conversation, text messaging, letter writing, blogging etc. With pain, one of the things I really think you want to avoid is isolation. I think it makes things worse because you're not thinking about anything else. I guess having 7 people in the house from ages 8-91 is a plus haha. It's never quiet and there is always someone to talk to. With chronic conditions, it is normal for relationships to change. Some people are accepting of this and some are not. Even though it can be a hard confusing time, it's bound to happen. This is one reason why it's important to be willing to make new friends. You can never have too many.

Get a pet! Pets are great companions. I'm personally a dog lover. Growing up, we always had a dog. I can't imagine life without one. They accept you no matter what physical ailment you have. They are happy to play one minute and lay by you the next to keep you company.

Daisy is happy to play

Daisy is also happy just keeping me company
LAUGHTER!! Find something to make you laugh. Don't be afraid to make yourself look silly and don't take life too seriously. Sometimes it feels good just to let go.

My niece Lizzy got this outfit as a gift. I told her I bet
I could fit in it. Surprisingly, I fit into her clothes.

Here's Lizzy in her outfit. She had my sister sew
the pants smaller so I wouldn't fit into them haha. 

People with Joint Hypermobility Syndrome aka
Ehler-Danlos Syndrome-Hypermobility Type lack the
protein collagen in their body. In my Christmas basket
 was this hair product. It says it has instant collagen infusion.
Now I joke I should have been looking in the hair care
aisle for medical treatment all these years.
One of the most important things I have discovered is to do something to help another person. Sometimes people with chronic medical conditions can get caught up in the drama of it all. It's important to take a step back and look at what you could be doing to help another individual. Be it a listening ear, writing a blog post, donating art, having a friendly conversation, or supervising a child so they don't burn the house down while they try to cook a pancake. The point is, you don't have to go out of your way to help another person. It can be as simple as just listening to somebody and letting them know you are there for them.

Everything I have written on this post I do all the time. You have to live life with a purpose. I never said it was easy but I refuse to give in. Every day, I have to chill out at some point in the day. It's just the way it is. If your body isn't working well one day, do something that only requires your mind. I hope some of you have found this post helpful. It doesn't cover everything I do to deal with pain but I think I've covered the most important ones that I do.

Link to My Impossible Medical Journey Fundraiser:

Thursday, January 9, 2014

It's Official! A Diagnosis 2014

Where do I even begin? All the confusion, frustration, and wondering why all these years finally has an official answer. The emotions are all over the board. From happy to sad to angry. At the end of the day though, the most important thing is there is finally validation because on January 7, 2014 I was given a diagnosis.

How it all played out: 

In November 2013 for no apparent reason my hips started moving in ways they shouldn't. I told my mom about it but pretty much kept it to myself because even I didn't understand why it was happening. I was also noticing I was getting dizzy more frequently whenever I would go from sitting to standing, my heart rate seemed high, and my heart was beating fast. When these symptoms worsened I started questioning again if there is some underlying problem. I began to research and the next thing I know, I was reading about Joint Hypermobility Syndrome and it was like the last piece of the puzzle was finally put into its place. I emailed my medical team and was told if I wanted peace of mind I could see a geneticist to see if in fact this was the ultimate cause of all of my symptoms. The next day I made an appointment with a geneticist and my appointment was scheduled for February 14, 2014.

As I sat on the couch reading about this syndrome, I can't even convey the "Oh my gosh" feeling that gripped me. For seven very long years it has felt like I have been given jigsaw puzzle pieces one at a time and when put together there were still pieces missing and the whole picture wouldn't appear. I felt like nobody understood what was going on with me (except my immediate family) and I felt as though some  family/friends were distancing themselves for a reason I'm not sure of. Giving the benefit of the doubt, maybe it's just people not knowing what to say. I know I've changed the past year and a half. There have been a lot of big medical things between surgery and travel that have occurred. In a matter of 3 months I went from doing relatively well in Colorado to finding out I have bilateral nerve injuries, I need a reverse shoulder replacement, I need scapular muscle reattachment surgery, and I need Botox injections that I am not comfortable getting. That's a lot to wrap your mind around and learn to accept. If my head wasn't filled enough thinking about the upcoming plan of treatment, the more I researched on Joint Hypermobility Syndrome the more intrigued and certain I was that this is the answer I have been looking for to explain ALL of my symptoms.

Sunday, January 5, 2014 the state of Illinois was going to be getting severe subarctic temperatures to accompany the already 20 inches of snow we have on the ground. Schools and businesses were going to be closed the next day. People were being strongly advised to stay indoors. The wind chill temperature was -47 degrees Fahrenheit. Sunday night my mom says to me, "Heck, maybe there will be a cancellation at the geneticists' office tomorrow. You should call in the morning".

Lots of snow

The trees sure do look pretty covered in the snow
Monday, January 6, 2014: Lady Luck was on our side. At 9:00 in the morning I called the geneticist to see if they had a cancellation. The receptionist said, "Let me put you on hold one minute". My heart is beating fast as I am pacing back and forth waiting for her to come back on the line. She came back on the phone-line and said, "Can you be here at 10:30?" I replied, "Yes" and the mad-dash to get out the door officially begun. My mom and I were "running" around the house grabbing all the medical binders and information that we would need. It's a good my mom and I have adventurous souls because man was it cold outside!!! We carefully made our way to the doctor's office. My nerves were racing.

After meeting with the geneticist I was told she would get back to me in the next 2 weeks. Everything was definitely indicative of a connective tissue disorder. She needed to go do her research and go through my medical records to determine what type.

Tuesday, January, 7, 2014 I received an email in the evening from the doctor. I was officially diagnosed with Joint Hypermobility Syndrome (JHS)/Ehler-Danlos Syndrome-Hypermobility Type (EDS-HT). This is a genetic condition in which your body lacks the protein collagen. The type I have is not life threatening. This syndrome causes your muscles, ligaments, tendons etc. to be weak and prone to tearing. Since the tissue is weak it makes your joints prone to subluxations/dislocations. It can also effect other systems in your body. This diagnosis explains ALL my symptoms. From the loose joints to the dizziness. I will be seeing a doctor to determine if I have postural orthostatic tachycardia syndrome aka POTS. There is no cure for My initial reaction was validation, anger, and sadness. How could I've been told this is ruled out and then be diagnosed 7 years later? The diagnosis of EDS-HT is huge. All of the protocols for bracing and rehab would have been different after all of these shoulder surgeries. Even though the proposed treatment plan doesn't change, there is so much weight lifted off my shoulders knowing there is a very valid reason why all of the surgery would last 3-4 months and then fail. I wasn't going crazy all of these years and I wasn't putting on some sort of "charade". The good news is starting today we can look forward and put a better plan into place to get me better. It just goes to show you, never give up and be persistent when it comes to your health. Thank you to those of you that I know and those of you who I don't for all of your support!!

Here is a link if you want to read more about joint hypermobility/EDS-HT:

My niece Emily and I at Christmas

Fundraising Link: