Answers. Changing Plans. Saving Money.

Well, it seems I have hit another bump in the road.


Dr. Matsen's office called me today and he didn't give me a straight up "No" but that's what it feels like. He told his medical crew to let me know he would see me but he would not be able to schedule me for the all in one visit I was hoping for...which I kinda knew was coming. Instead, I have to spend money to fly up two separate times to see him. The lovely lady on the phone also told me that if he thought he couldn't help me then he would have just said no, so there is some hope that something can be done...whether I'll like the outcome or that my arm will be fully functional again, I don't know.

Right now, Brian and I are scheduled to land in Seattle, Washington Oct, 16, 2012 at 6:10pm, stay the night at the Inn at Queen Anne (which I got a screaming deal on), see Dr. Matsen and his team Oct 17, 2012 at 9:20am and then land back in Vegas that night at 6:30pm. A lovely 24 hour medical trip to Seattle!

Since, my one stop shop option has been revoked, we as a family decided to move the consultation back a few days. My original date was October 1st, but since he won't be doing surgery all in one visit I can't afford $799.20 in plane tickets for just 1 day. So I wait a month.

I wanted to also thank everyone that has help spread the word and pitch in donation ideas as well as the donations that have already come through. I was able to buy half of my plane ticket from what people have already given. I have everyone's address so I plan on sending personal thank you cards to each one of you! It really means a lot!

Ill keep everyone updated if any other news comes about...here are some pictures of what our trip will look like in exactly....26 days!

 

 

For a total of  1,123 miles!

The Waiting Game

Friday, I sent off all my recent medical information to Washington. A CD of images from my 2 MRIs and CT scan, a total of $47.14. Tack that on to my running total please...

Waiting to hear back from Dr. Matsen is probably the most stressful part. I do not want that phone call saying he can't help me...I couldn't handle that news. I want him to inform his nurse to call me and say the have a new innovative surgery to fix my scapula and they can't wait for me to arrive, a fix that I'm going to be able to live with for life. Cross my fingers, that's how it goes.

On top of all the waiting I've been doing this weekend, I think I did a little more extracurricular activities than my shoulder had planned. I spent majority of Saturday out and about and getting ready, I had purchased tickets to a play here in town back in April, not realizing I would get hurt, but I wasn't about to miss it either. I also attended a baby shower that day. In the end I think it was the driving and sitting in bad positions that got me. I spent alllllll of Sunday night on the couch "sleeping" which really consisted of me awake all night in pain listening to Sons of Anarchy episodes. I had no other choice but to take more pain medicine than normal which left me unavailable the entire day. 

This is a picture my mother captured of me at 3:30am, looks comfortable huh!? 

Someone had posted on Facebook, Boppy, not just for nursing moms...and ain't that the truth.

Hopefully, I have an answer from Washington within a few days. My Las Vegas physician, Dr. Manning, put in for a STAT referral and that should mean I have news this week.

I also wanted to touch base on a quick topic. I recently allowed Ads to be posted on my blog to help generate some revenue for this trip. I have to raise a minimum of $2000.00 for travel and medical expenses, plane tickets arent cheap these days and neither are co-pays and deductibles. I have also added a donate button on the right. I was very skeptical at first, thinking people would judge me for it but I really appreciate just everyone taking there time to read this blog, if you chose to donate, great thank you...if not, I understand. 

I know my disability isn't "life threatening" and I'm not going to die from it tomorrow but I just want everyone to take a moment and realize how dependant they are on their dominant hand and test yourself for just one hour a day by not using it, see how much you really do need it.

Hopefully, I'll be able to blog by the end of this week with good news about Washington!

Fingers Crossed! 

More Feelings! Feelings, Feelings, Feelings!

When I was younger I saw many different surgeons who said they could help but were flabbergasted about the findings they saw when I actually came into my appointment. Some doctors were kind and said I can't help you but let me send you to a colleague..others, called me a circus freak, collected my money, and sent me on my way.

I guess I never really knew the extent of how rude some of them could be because I was young but now that my symptoms have arisen as an adult and I go to the majority of my appointments alone..some doctors are utter ASSHOLES!

Today, for example, I was referred to a doctor here in town by a friend. The doctor said he had done the scapula surgery before, great, Ill take a shot and go see him. I didn't have any expectations thinking he would be able to help but I did not expect to be treated like a mannequin and basically called in liar in so many words.

I informed him before he started examining me that it was very painful to move my arm and it snapped the moment my arm was lifted or put down, even if I was relaxed..IT. STILL. SNAPS. Without any hesitation he very roughly raised my arm into the air and sent me into a tizzy! Of course, I started to whimper and tear up because of the pain but when he turned and looked at me and said, "Why are you doing that? Stop it!". I knew he was not the doctor for me. He went on to say some mumble jumble about wanting to talk to my doctor in Seattle..blah blah blah! I'll stick with the best, thanks! I called their office and politely told them there was no need to request medical records because I would not be using this surgeon...I wouldn't even let my worst enemy be operated on by him and that's saying something right there!

As a nurse and actively in the medical field it disgusts me when someone has no consideration or bedside manner with patients! Your intelligence isn't attractive, patients like doctors not only for their ability to fix them but their ability to speak to a patient with understanding.

This doctor sits right up there for taking the number 1 spot for "Don't see this doctor" with the doc that called me a circus act and the one that messed me up in the first place.


I appreciate the referrals from all my caring friends but I've decided that I'm going to stick with my Seattle doctor, Dr. Matsen, and just find a way to raise the $2000.00 to get there for the surgery that I know works.

Feelings

When I decided to write this blog I made a commitment to myself to my 100% truthful at all times. I want this blog to be raw and uncut from how things are really going.

Frustration. 
I am at my max level with the local radiology group for not having my reports to me yet. I was supposed to have them in Friday and here it sits almost Thursday and I have nothing. I honestly wish the radiologist who is taking her sweet jolly time transcribing my report knew how important it was for me to fax my information to Washington. Do they think plane tickets grow out of my ass and poof I can magically fly there for free just for fun on any given day? Honestly, in what world and who do I have to speak to in that world to get some damn results in a timely manner!? Hopefully, tomorrow they get the point with my final phone call. 

Anger
This feeling I can blame entirely on "that time of the month" and my meds. I'm angry that I have to sit here at night and suffer with this pain. I'm angry that this even happened to me again. I'm angry that when one person falls apart everything falls apart and someone just can't pick up a little extra slack. Im angry that I'm whining about being angry. I'm angry that I'm even angry.

Pain
All through nursing school I heard that pain was the fifth vital sign...those peeps weren't lying. Lately, I have been experiencing more and more pain daily and it's beginning to expand away from the shoulder and scapula itself into surrounding muscles and tissue. My biggest issue is that I'm only taking the medicine at night to get to sleep and not during the day, but I won't allow myself to do that unless I'm so in dyer need of it. I always remember saying to myself when someone came in complaining of pain, with no facial signs of pain except just their verbal expression of it, junkie, someone looking for a quick fix. That judgemental attitude is officially out the door. I walk around everyday with a stabbing pain in my back and function as normally as possible until I hit my bed at night...that's when I break down.

Despair 
I have, at this moment lost all feeling of hope. I don't want to accept that this might be forever but I'm stick in the mud and not moving forward. It's a horrible feeling and I hate myself for it but right now I'm just over it all and ready to be alright with a broken shoulder, forever. 
Tomorrow, I might wake up feeling rejuvenated and back to my old self but right now I'm going to sulk in self pity because I have the right too.

Finally, I want to make a very quick note about another feeling that haunts me daily. I questioned myself for a while on whether to share my story thinking I would be scrutinized about it. Some people might say, it's just a shoulder injury no big deal and I agree. I'm alive, healthy for the most part , and going to live through this but I had to realize that people are going to judge me no matter what. My feelings, discomfort, and pain belong to me and I can't be the only one out there suffering from pain that isn't fixable at this moment. I'm not writing this blog for pity, or attention, or anything but bringing awareness to the injury. There has to be some young girl out there who is physically playing here heart out in a sport and displaying the same symptoms I have or maybe it's an older male who has been suffering with the same symptoms who doesn't have the means to search for a doctor to help him. I'm trying to reach those patients and let them know...you're not alone. 

I hope this blog can reach many different people to reach out and seek available treatment for their difficulties in life. No One should have to suffer daily like this, it isn't living and we all deserve to live pain free to our full functional ability.


End emotional hormone raging rant. 

Dr. Frederick Matsen III, MD

To me Dr. Matsen is my saving grace. He is that man that has all the answers and all the reasoning. I can barely remember first flying to Washington for the initial consultation. I remember the windows in the hotel room, the pier with the fresh fish, and Dr. Matsen's face. He knew when he laid his hands on my shoulder that he would be able to fix me...a second and third time fixing I don't think he was prepared for but he could fix it.

The first surgery in Seattle was..difficult. My parents drove me to and from Washington for the surgery and the ride home wasn't as pleasant as expected. My 5 day hospital stay was rough and I'll never forget being so hungry a few days after surgery and begging my mom for a bag of Nacho Cheese doritos, devouring the bag, and then throwing up all over myself a few seconds later. Ill never forget the way I itched my face from the morphine PCA, and ill never forget the massive Barnes & Noble we saw driving out of Washington on our way home.

The second surgery was a bit more smooth. After falling own the stairs and tearing everything out that we had worked so hard to repair in the first place, getting to Dr. Matsen wasn't as difficult. I didn't wait almost 2 years for surgery, it was maybe 2 months. I can remember the words Dr. Matsen said when we went in for the second consultation just 2 years later, "I don't think ill be able to fix this again after this". Its the words that ring in my head everyday hoping that in 7 years they have come up with something else and will be able to help me. If he turns me away I don't think there is a doctor in this world that will know what to do with this.

I have posted a link to a mini bio about Dr. Matsen below and links to his websites where he can be reached.

http://www.orthop.washington.edu/?q=faculty-profiles/frederick-a-matsen-iii-md.html
Dr. Matsen's bio page at UW Medicine

http://shoulderarthritis.blogspot.com/
Dr. Matsen's own shoulder blog.

Dr. Frederick Matsen contact info:
Bone & Joint Surgery Center at UWMC
UW Medical Center-Roosevelt II
Second Floor
4245 Roosevelt Way N.E.
Seattle, WA 98105
(206) 598-4288

Snapping Scapula

I guess before I go any further I should described what's happening with my arm. A snapping scapula has many forms. Some patients have very minor forms and have minimal to no pain at all with movement and they only experience a rubbing sensation with movement. Then there are patients like me, who have the most severe pain imaginable radiating from your back to your shoulder to the tips of your pinkie fingers. I have severe snapping of my scapula over my rib cage. It can be heard, seen, and felt with movement of my right arm. My range of motion is keeping my elbow glued to my side and only being able to function at waist height. I can not grab anything over my head, I'll snap. I can not pick up my kids, I'll snap. I can not hold onto a cup of water, I'll drop it. 

You don't realize how much you rely on your dominant arm until its not functional. 

Normally, and for years, I lived with the pain...since I have other injuries and tear to my shoulder right now, I'm constantly in pain. I can't sleep at night and all day long I try to use refocusing to try to think about something other than the pain. It ranges from soreness all day to a stabbing knife in your lung, or just the bone rubbing over bone is enough to send you into a rage.  I have no other option as a mother but to be 100% for my children during the day, their safety is my number one concern so I can only take medication at night to sleep. I won't let this affect them in anyway, my physical injuries are my injuries, not theirs. Over the last 3 weeks I have exhausted myself by trying to be 100%, but I'm running close to an empty tank and hoping for results soon. I pray daily that October 1st comes quickly and that my surgeon can even help me because I cannot deal with this for the rest of my life. 

My next post is going to be all about my two surgeries that preceded the one I'm hoping to have and the only Doctor in North America that can fix me, Dr. Frederick Matsen in Seattle Washington. 

The beginning to finding Doctor Right.

September 11, 2012
Before I begin I want to take a moment to say we will never forget those lives that were lost today. 

It's hard to start documenting events into words when you have been describing your situation to people for nearly ten years but I'll give it a shot.

When I was 14 years old I was at the peak of what was going to be an amazing four years of high school softball. I can remember it like it was yesterday, I was playing right field and made a throw to home...instantly I began feeling numbness and tingling in my fingers that radiated to my shoulder. It was several days before I got into an Orthopaedic doctor who was known to be very well and his practice was supposed to be the best, in my case that was wrong. 

I presented to his office with snapping in my right scapula, it was minimal and probably could have been described just as light grating with movement and also shoulder pain. Without any imaging except an x-ray, I was scheduled for surgery two days later. Recover seemed to be going well until I discovered in physical therapy that the grating had now exacerbated and turned into full blown snapping when I would raise my arm in front of me,  to the side, and as well as when I would move my neck away from the shoulder. 

To make the next part short, the doctor who performed the operation immediately released me from his care claiming he could not help me and refused to provide anymore information. Red flag number one that he caused more damage by doing the thermal heat shrinking to the anterior portion of my shoulder under my clavicle. Big mistake doc.

Needless to say, I spent the next year suffering, in and out of doctors offices who called me everything from a circus act to the most amazing medical find they had ever seen. I saw a minimum of 15 different doctors from 3 different surrounding states. I spent hundreds of hours in physical therapy, saw a neurologist multiple times, and my parents spent well over there budget hauling me around to all these places. 

I was your average teenage medical mystery.