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.

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:

Friday, January 3, 2014

Murphy's Law Comes on Our Road Trip 2011

Happy Holidays to everyone and I wish you all a happy healthy 2014!

It's about time that I got back on track. I had to go back and read the blog post "2011 is Going to be Quite a Year" just to see where I even left off. I didn't realize it has been nearly 6 months since I wrote it. I guess time flies when you're having fun. So, to catch you up to speed, I was diagnosed with Quadrilateral Space Syndrome by a doctor in California in January 2011. Nerve decompression surgery would be done later in the year to get that addressed. In March of 2011 I had right scapular muscle reattachment surgery and a shoulder stabilization procedure by Dr. B in Lexington, KY.  The surgery needed to be done again because I needed to have a newer procedure done where muscles are transferred to stabilize my shoulder blade. The shoulder joint needed to be tightened because I was subluxating out the front. Here's what happened next...

After the surgery, recovery was going relatively smooth for about 2.5 weeks. Then one night my dad got a phone call that my sister had slipped backwards rollerskating and broke both of her wrists. A long story short, this led to subsequent surgeries the rest of the year and her out of commission for a while since both wrists were effected. Between my sister and I, there were 10 surgeries that year. She had 5 and I had 5. When my sister got hurt, recovery became harder for me because I had school and had to help take care of my 2 nieces who were in preschool and 2nd grade at that time. My mom and dad had to work. A typical day for me was to get up and get my nieces ready for school. After that my dad would drive me to school and pick me up. After I got picked up from school, I would do my homework, try to relax for a bit , and then watch my nieces when they came home. It was a hard time few months for everybody.

By the time May rolled around my mom and I were getting ready to go back to Kentucky for a post-op appointment with Dr. B and to figure out what was going on with the back of my right shoulder joint. We decided to bring my nieces with us. It was a girls road trip. Looking back at it now, I don't know how we survived that road trip. It was as though we had packed Murphy's Law with us (anything that can go wrong, will).

When we arrived in Lexington on May 25, 2011 we all had a very nice evening. We went out to dinner and after that, my mom and I took my nieces to the swimming pool. By the time we got back to our hotel room, we were all very tired. My nieces and I were dozing in the room watching TV when my mom went to the parking lot to get the last piece of luggage from out of the car. I remember being in the hotel room and hearing a big boom. It sounded like someone pushed one of the cleaning service carts into the wall. I didn't think it was anything...wrong. In reality it was actually my mom who caught her shoe on the lip of the elevator floor and falling into the wall and onto the floor. My mom is a very stubborn woman and didn't want to alarm anyone because she was the only driver.

I remember getting aggravated at her that night because she wouldn't turn the light off in the room and kept running in and out of the room all night. The next morning when I woke up I looked at my mom and everything made sense. The first thing I said was, "What's wrong? What did you do?!?" With a sheepish grin on her face she said she fell into the elevator and proceeded to show me her arm, shoulder, and clavicle. Not good. So, we went to the doctor's office to see Dr. B since I had an appointment. My mom saw him too. I told Dr. B my right scapula was doing well but I was having a lot of pressure building up in the back of the right shoulder joint. We thought it might be scar tissue building up but I wasn't completely convinced. As far as my mom goes, she had a lot of bruising and swelling and was told she needed to follow up with Dr. K in Illinois.

Fun in the swimming pool after dinner
May 27, 2011 was going to be a fun day because we had two little girls with us who wanted to see the Kentucky horses at the horse park. We woke up and went downstairs to have breakfast in the hotel. As I reached for my glass of milk, the pressure that I had in the back of my shoulder joint gave way and went POP! Oh boy, that wasn't good. So there we were. My mom and I were beat up. We finished getting ready, put on a happy face, and went to the Kentucky Horse Park for the day. It wasn't crowded at all so we were able to get up close to the horses and take our sweet time. Minus the injuries, it was a great day.

A horse's head looks very big when you are little

My mom and nieces feeding the horse

My nieces and I
On May 28, 2011 my mom and I wanted to show my nieces Natural Bridge State Park and let them ride the ski lift up to the top of the hill. We took them on a walking trail and they got to see things they had never seen before. It was fun to watch them experience something new. When we were done at the park, my mom and I thought it would be a good idea to get sub sandwiches and picnic in the forest. This turned into a train wreck. Somewhere along the way in this very large national forest we made a wrong turn and I guess you could say we kind of got lost. After a couple hours we found two bikers on motorcycles who led us to the correct road. Three hours later we left the forest. It wasn't funny at the time, but writing about it is pathetically amusing now.

The view of Kentucky from the top of the natural bridge
As we headed home the next day we knew it was going to be a rough ride. My mom was killing and there was nothing I could do to help since I  can't drive. All we could hope for was good weather; however we seemed to have packed Murphy's Law with us so that wasn't going to be the case. The ride started off fine until we hit the state of Indiana. Then there was heavy downpours of rain and very scary looking clouds. As my mom drove packed in ice, I was on tornado watch. Fortunately, there were no tornadoes and we made it home safe. Our driveway never looked so welcoming before.

The storm clouds we drove through in Indiana

More storm clouds
All in all we had a good time if you take out my mom falling in the elevator on day 1, my anchor popping on day 3, getting lost in the forest on day 4, and driving home through what looked to be the tornado gates of hell on day 5. The important thing is, we still made the best out of the circumstances we had and my nieces had a great mini-vacation. We are all able to look back on this trip and laugh about it.

Now that we were back in Illinois, let the doctor appointments begin again...