Release Me

March 10th will be the eighth anniversary of the death of the man that I once loved dearly. He has been on my mind lately because I still miss him and I don't think I ever recovered completely. 

Looking at me you would say that I am doing well, but in reality his choice to end his life and to do it at a time when I was the one to find him, has had a huge impact on me.

It has confirmed in my mind that I am not worthy... if I were then why am I always left alone? I have seen this time and again that when I let down the wall I get hurt. And the hurt is not just a minor thing that comes and goes quickly. 

I have attempted to date since his death, and for a brief moment in time things are good but then I find my self once again where I started, alone.

In thinking about things I was inspired to write the following song which as I was writing I was hearing my friend Telle Smith from The Word Alive screaming the lyrics. (here is a link to his band http://www.facebook.com/thewordalive )

Release Me

Our time was fun but you choose to go

Quit holding me back, you lost that role.

Not able to see beyond the pain at the bottom of your glass

You chose to tie that noose.

Chorus

Release me get out of my head

Release me you're already dead

And now it is ended 

The years they have flown

Your body is gone 

And still you harass me from the beyond.

Chorus

I want to move on 

It is way past the time

To make my final demand

So listen up here it is.

Chorus


Yes I know it is a very rough draft and without hearing the chorus screamed like the boys of TWA do it doesn't work!
 

Night Draws Near by Anthony Shadid

On Feb 16th 2012 the world lost Anthony Shadid an intrepid reporter who worked for the New York Times. He died from of all things an asthma attack while on assignment in Syria. I saw this news report and was saddened by the fact that while covering an uprising,  something as simple as his allergy to horses would kick him in to an attack and cause his life to end. 

I had no previous knowledge about Anthony prior to his death and only learned of it by catching up on the news from the BBC who had been covering the deaths of several reporters in Syria. I became intrigued by this man and discovered that he was a published author. His book Night Draws Near was published by Picador a division of Henry Holt and Company, in 2005. This book is about the lead up to the American invasion of Iraq and begins with background on the country and the people. 
It is a fascinating look at another world and how the American "Liberators" were viewed prior to the war and how the people of Iraq expected the events to unfold.  

There were two quotes in the book that I want to share, the first is from the Iraqi artist Mohammad Ghani Hickmat who said "We'll bend but we are not broken. They can bend us but they cannot break us. We are like palm trees. The wind will bend them but it never breaks them. We live. This is the Iraqi character. We cannot be broken." I discovered that he survived the war and passed away last year. Here is a link to his life story http://www.jadaliyya.com/pages/index/2641/farewell-mohammad-ghani-hikmat  

The second quote is from Wamidh Nadhme a professor from Baghdad University who said this before the invasion. "The American invasion has nothing to do with democracy and human rights. It is basically an angry response to the events of September 11, an angry response to the survival of Saddam Hussein, and it has something to do with oil interests in the area." "Even if the Americans are capable of overthrowing the regime, they will  face more and more resistance from factions and groups who are not necessarily pro-regime or armed by the regime." http://www.browndailyherald.com/campus-news/shadid-brings-reporter-s-perspective-to-iraq-war-1.1675624#.T0zUZnnZWSo

I have barely scratched the surface in this book and I am completely hooked to hear the story as it unfolds as told by an Arabic/American. You see Anthony was born and raised in America and was a valuable part of the NYT team because of his Arabic language skills. I wish I had been aware sooner and it had not been his death that lead me to his book. Here is a link to the story of his death. http://www.bbc.co.uk/news/world-middle-east-17071591

RIP Anthony Shadid.

Rare Disease Day

February 29th is Rare Disease Day it is a day to acknowledge that there are many people in the world who are living with diseases that are rare. Here is a link to their Facebook page http://www.facebook.com/rarediseaseday 

I wanted to share this since I have joined the ranks of those with a rare disease. I now fall into the 1.8/ 1000000 people who have PVNS (Pigmented Villonodular Synovitis). I think that the goal of groups like the one I have listed above and  NORD (National Organization of Rare Disorders) http://www.rarediseases.org/  is to raise the awareness of the world to these rare conditions. 

Currently PVNS is not even listed on the NORD site and that is frustrating because there are few people in the medical community who have begun to study this disease. Information is limited and there are no answers and no cure. To my knowledge there is no research being done on this either. 

The one place that I have found that I can get answers is on the Facebook page where others like me have gathered to share our stories and to commiserate http://www.facebook.com/groups/91851410592/ . Unfortunately the stories are all similar few of us are finding doctors who KNOW about this disease and many are being shuttled back and forth from one doc to the next all in the hope that the next doctor will know more. While others are being told that the doctors refuse to care for them any longer. 

Lack of knowledge and lack of funding for research are problematic and we need to find a way to fund research on a National/International level for this disease and for many others. 

Please take the time to educate yourself  and do what you can to help.

Thanks!!!

Awake Too Early

It is difficult to sleep when the mind is whirling trying to solve a problem for a friend. Being a friend requires one to listen a lot and speak little. Mainly because people like to hear themselves more than they are willing to listen to the advice they claim to need. Is that a terrible thing to say?
It is frustrating to watch someone self destruct when you know that if they would just shut up and listen they might find the answer that they are seeeking.

Oui vey, I wish I could just wave my magic wand and make problems disappear. Mine included, I went to see my shrink today and of course I don't allow myself to focus on what causes me to tear up long enough to figure out what causes the tears. So now my job is to allow the emotions and rather than try to solve the problem I am supposed to just observe. I am not good about letting my emotions surface. At my appointment I teared up for a few minutes and then said ok pity party is over now...to which she replied that I should not put and end to the emotion  by setting a limit to the feelings. OK that sounds good but I can't go around on a daily basis all upset and ok tears and go out in public like that...then when I get home I distract myself and don't ever get back to dealing with life. Which makes it difficult for me to be able to listen and advise others who are so self focused. 

Pity party

I am having a pity party day, the weather is crapy and my left hip is hurting. I stayed in my pj's until 4PM and spent the day getting caught up on my recorded episodes of NCIS and NCIS Los Angeles.
I am working on knitting my 7th pair of socks and I got a lot done while watching the recordings. I really love the Alpaca wool that I bought from my shrink, she has an Alpaca farm that is called Alpacas of Moonlight Hollow...and they produce the best wool. So far I have made 3 pairs for me, a pair for doc, and a pair for my good friends Nita and Angie.

The reason for the pity party is this;
I have been doing very well on my recovery until yesterday when I was doing my exercises. I was attempting to stand on my surgical leg (left) and balance for  30 seconds, unfortunately when I was trying that my hip slipped.  It happened again today, I was just standing in the kitchen and used my right leg to push a bowl over to one of the dogs and my left hip slipped out of place again.

So today I am having a pity party...well since I am lying in bed with the critters it is not much of a party!
I have a cat one my left side, a cat in my lap and a dog on my right. I am in the midst of hot and cold therapy treatments,and I am hoping that will help and I will be back to where I was on Thursday. Well enough abput me!

Sitting by the fire

2/9
The sun it is not shining, the day is rather dreary, I am warm and toasty sitting by my fire. Life is cruising right along as I recuperate from my surgery. I am getting around easily now and have dispatched the crutches and replaced them with a cane. PT is going very well and I am getting more and more flexible every day...and the hip pain is minimal in comparison to how I felt prior to surgery.

2/10
Today is my follow up appointment with the PA. The drive to Columbus was not bad and the news is confusing. While we suspected that PVNS is the cause of my hip problem, the pathology report said that that samples do not look like PVNS. Hhowever under the microscope they do see giant cells which usually are seen with PVNS. I contacted my GP to find out what he thougt about the report,his response is that the PVNS is confirmed. So now i wait for my 6 wk followup with the ortho doc and discuss the plan for the future. He had already said that he wants me to followup with the ortho oncologist in six months.

England's Monarchy

Sixty years ago on Feb 6th the King of England George VI passed away in his sleep after a lengthy illness. His daughter Princess Elizabeth and her husband Philip were away in Kenya on Safari and did not get the news immediately. She and Philip were spending the night in a tree house of all places when she "technically" became the Queen of England. In all the time I have known she was the queen I had never heard this story. I guess that it never crossed my mind to wonder what lead up to her becoming the sovereign ruler. 

Once again I am awake at an odd hour and was looking at the latest news tidbits and came across this wonderful story on the BBC.  The moment a princess became Queen. There are 2 clips associated with the story that show what was happening in the UK at the time of King George VI's death, and what I found to be so interesting is that after making the announcement of his death the BBC shut down for the day and only came on the air for brief news bulletins at specific times. Not only that but the funeral was NOT broadcast on TV but was only on the Radio. The Queen's Coronation was the 1st event to be broadcast live on TV.


What struck me about the BBC shutting down after the king's death was the differences in how it would have been handled by today's media. Our constant / instant access to information requires that the media outlets work 24 x7/365 to get the news to us as expediently as possible. Never again will there be a time that out of respect for a fallen leader the news media stops what it is doing to pay their respects. It was an astonishing thing to learn tonight. 


Congratulations to the Queen on her 60 years and may she have many more!
 

Good morning, it is 2:40 AM and once again I am awake and in pain...luckily it is localized to only one joint today. My hip which was in severe pain has reduced to a dull ache since I had surgery on 1/24/12 and I am now only being awakened by the pain in my right shoulder. 

I have to say my Hip Arthroscopy at Ohio State University East was a great experience! I had the BEST Anesthesia Team EVER. . . And since I have had several surgeries in the last 10 years I have a lot to compare to ... this group of doctors was the first to listen to me when I said that I CANNOT take Vicodin, Percoset or Tramadol for pain control. All three make me violently ill so I am left with Tylenol 3 and Dilulad both of which I can take and have few problems. I was greatly impressed that they also listened to me when I expressed concerns that the last 2 surgeries I ended up in the ED the next day with Atelectasis which by the time I made it to the ED sounded just like Bronchitis. Any way this is the first time that I had NO breathing issues following Anesthesia. Interestingly enough I not only had general anesthesia this time but also a spinal because of the hip procedure.

My surgeon Dr. Ellis was wonderful, surgery did not begin on time but that was due to his prior cases running late. Not a big deal in the grand scheme of things. I came out with only 3 small punctures from the trochar's and that is it. I also was given a pain ball (which was a large ball with two small tubes inserted into the surgical site...the ball was filled with saline and a pain med). This ball created the only complication I had while at OSU East. . . namely my leg was so incredibly numb that when I got up to pee I immediately fell on the floor. Note this was after I had already been up 20 minutes earlier with the Physical Therapy staff who were making sure I could navigate on the crutches. After practicing with them I had no concerns about using the crutches but when I stood up my leg just gave out and I went down on to my knees. The poor pregnant nurse who was in the room was going attempt to lift me but I insisted she get someone else to help and I stayed where I was for about 3 minutes until help arrived. No lasting problems happened to me as a result of the fall. 


I was discharged the day after surgery. . . I don't know how anyone can go home the same day after this procedure but apparently there are some that do! Staying over night was a no-brainer in my mind. The journey from Columbus to Dayton was not super comfortable but I made it ... and I was very happy to get into my bed with my CPM machine running again. I was told that I only needed it for 4-6 hours a day, but I have been using it all night and for many hours of the day. The CPM (Continuous Passive Motion) machine is generally used for knee surgeries but I do believe that it has done wonders for my hip. I am now 11 days out from surgery and I am already down to one crutch and am barely using it for support. 


I started PT on Monday last week and boy was that a rough time. . . my PT is a friend who spent the entire time stretching me out. Who knew that the Iliopsoas muscle group were even there...Not me but boy do they hurt when not stretched out enough. The Iliopsoas are the hip flexor muscles that we use when bending our legs, walking, standing etc. Lots of time is needed to stretch this group of muscles so part of my exercise regime is laying on my stomach and doing things that will stretch that specifically. It is apparently working because I can stand much straighter and my ability to walk on both legs has gotten much better. 


All in All I am very pleased with the progress I am making on my hip repair... now to get my damn shoulder fixed. Oh yeah I remember the problem with that...they want me to be off work for 6 months. Who can afford to take off work for 6 months? Wow I need to do something but I am not sure how soon I can get it done.