What Are You Willing To Risk To Truly Live?

“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” Anais Nin

I found this question and quote on the discussion board of the Shameless Community. It was posed by Pamela Madsen the author, fertility expert, and sexalogolical therapist, to the community at large asking everyone what is holding you back, what do you fear. I find it interesting that she not only asks but answers the question from her own perspective and talks about her fears and what she struggles with every day.

I have been thinking about this question for some time and fear is a difficult thing to name sometimes. First you have to acknowledge that you have the fear then claim it and address it.

My life has taken an unexpected twist due to being diagnosed as part of 1.8 people per million with a rare joint disease called PVNS. Because of this my fears have changed and while I know I will need to make changes in my life to accommodate this disease I am terrified of the changes. First and for most is that I will not be able to continue my current profession forever. I am, like most people self identified by this career, and the loss of that identity will be huge.

On top of that a career change will entail loss of financial security that I have worked so hard to establish. Don't get me wrong I am not wealthy but I am making enough to supply what I need and most of what I want. Any change will mean immediate loss of that security.

At the same time I can totally see that this disease has opened an opportunity for me to continue to develop and grow in my spiritual and personal beliefs and I can so understand that this is the Universe telling me it is time to make a change.

So no the next step is to embrace it and believe that the changes will be good for me in the long run and by accepting that I can allow myself the opportunity to blossom.

Thanks for the reminder.

I did it this time

Well it is official the ankle is broken. The ligament is pulled off of the ankle bone and the Orthopedic Foot and Ankle Surgeon said there are 2 ways to look at this 1) it is the very very worst sprain ever or 2) the easiest break ever. Either way it is a 7 week recover time 3 in a cast and hopefully the other 4 in a boot. 


So I am taking the week off to figure out how to walk in this darn thing. So far the worst part is trying to sleep. The cast is so heavy I can't get comfortable and it is on my left leg which is the same side I had the hip surgery on so it is affecting my hip as well. 


I went to the gym yesterday and tried to figure out what exercises I could do since swimming is not an option for a while. Turns out there are very few left. I was hoping that I could do the rower but even that is not going to work if the cast were an inch shorter then maybe... but in it's current configuration not happening. I ended up lifting weights and using the cable fly machine to do some upper body /oblique exercises. I ran into the gym manager as I was going in and he suggested I check with the Chiropractor on site to see if he had an Upper body bike I could use. The UBE is a great cardio machine that uses only the arms but gets the heart pumping. Unfortunately they do not have one at the gym or in the Chiropractor's office. 


I spent the day working on a project at the desk and running some errands and by the time I got to bed my leg was very swollen and throbbing. Today I must take it a bit easier and keep the leg propped up more.

Maybe I should listen to the Universe

It is becoming fairly obvious to me this year that the universe is trying to tell me something. Every time I start to get going and am feeling fairly good something puts a "hitch in my get a-long". Today was not any different. 


I was helping my son move a queen size bed to his apartment and we had just taken the frame out of the back of my van and he was walking it into the building, while I turned around to start unhooking the ratchet straps. When suddenly my left ankle twisted to the side and I heard a snap and I stumbled to the ground. Of course my all purpose word flew out of my yap (actually several times) as I lay on the sidewalk. 


I got up and assisted in getting the mattress and box springs off the roof of my van and up the stairs but the more I tried to walk the more it hurt and having heard the snap I decided the prudent thing would be to get an x-ray. So we headed off to the Emergency Department. Where we spent the next 3 hours UGH. And yes it is technically a broken Ankle... not of the bone itself but the ligament has pulled off the bone. 


So now I am in an air cast and need to get in to see an Orthopedic Surgeon this week. What a coincidence that Andy already has an appointment with his Foot and Ankle specialist on Tuesday in Columbus, and I was planning on going along any way. Now to see if they will put me on the schedule also. Luckily I have been to see this guy once before myself so it is not a new patient consult. 


REGARDLESS I am back on crutches and I am moving slowly again. Awake and unable to get comfortable so that I can sleep.

This is the 4th thing that has happened this year that has slowed me down. January was my hip surgery with 8 weeks off work for recovery. I was feeling fairly good and then in April was hit by a softball in a batting cage and apparently cracked my pinkie which fully broke 4 days later when I got it caught on my steering wheel. 
In June I spent the first week of the month working around the house climbing ladders painting etc. and ended up causing a flare up of my hip joint which filled up with fluid. Now 7 weeks later my hip has finally started to feel better and whamo I screw up my ankle. 


There is a message here.... 
SLOW DOWN! 


So maybe my life is due for a course correction? I have a tendency to let fear rule my decisions and while I know that there is a purpose to all of this I get fearful that I won't be able to pay the bills if I can't work. This is no small problem it is all encompassing and terrifying. I know that with this hip problem I can't continue in my present job forever. And yet I can't come up with any other solution. My line of work is specialized and going back to work at a hospital is not much of an option. 


While I know that I need to make a plan of action I am stymied and don't know where to turn. For a while I was thinking that I should look into the chaplain training at the local hospital, but since that is strictly a Seventh Day Adventist hospital and I have left the SDA church I do not want to have to be forced into a strictly SDA style of chaplaincy. I believe that every one has a piece of the "truth" and no one race or religion holds all the pieces. And I think everyone should be accorded a modicum of respect for their beliefs. 


So where to  turn ? I have been working on staying in touch with my inner peace and find while I swim that I am most connected and I find myself repeating the lines to the hymn "When Peace Like a River attendeth my way, when sorrows like sea billows roll. What ever my lot thou hast taught me to say it is well, it is well with my soul." This has become a sort of mantra that I repeat as I work my way up and down the lane of the pool. It sounds strange I know but it makes me feel calm and focused on the moment. 


So now grasping those words I have to say ... what's next universe?

Good Morning, NOT

Once again I am awake in the middle of the night...this is a fairly consistent pattern for me. Got to sleep at a relatively decent time (midnight) and was awake at 2:30 with my hip and shoulder feeling like hell. UGH I almost wish I could swim at this hour since swimming helps both the hip and the shoulder. Unfortunately it is the inaction of sleep combined with the mere fact of laying on either one that causes pain. I read somewhere recently that it is because inactivity reduces blood flow to the joints so there is more pain, I am not sure if that is 100% true but I have to agree that not moving makes it hurt worse. Now I am hoping that the Tylenol will kick in quickly and I will be able to get a couple more hours of sleep.

So as established I am awake and just hanging out on the internet checking FB etc. and I heard a what sounded like a gun shot! So now I am going to have to listen to the news in the morning and see if something happened here in Kettering. Interestingly I did not hear any accompanying sirens so what ever it was did not alert the KPD. I hope what ever I heard was NOT life threatening to anyone! Of course with all the power problems it may have been a transformer blowing but that is generally MUCH louder.


Thankfully the heat wave has broken! We are having the hottest season on record since 1895. And of course my AC can't keep up with 100+ temps. My house has been 84F every day. . . which is much better than 100+. . . but is still too warm. My poor dog Blaze who is a solid black is dying in the heat.
Today is the first time in ages that it was cool enough to take the dogs out for a walk. It was lovely but took forever because they had to stop at every smell along their route to see who had left them a sample. Tonight I even have the windows open and am actually feeling a bit chilled.
The grass in the state looks like it normally does at the end of August! YUCK! Dry and brown and awful. Even the poor trees are so dry that the leaves are falling off. I much prefer it to be green and lush. But seeing as there has been NO rain in ages we have no hope of returning to the greenness of early spring. I can't even find a chart of how far below normal our precipitation level is at this time. The last number I heard was 8 inches below normal. Which is not good! We need to have a rain dance soon!

Ah well I am off to attempt to get some sleep~

Just so you know

We, several people who have PVNS are working on developing a Research and support organization. I believe I have mentioned it. 
We even have a name now. The PVNS Global Support and Research Institute. We will soon be filing the Articles of Incorporation and will be launching a Web site.
 
As part of that I have done a map using location data gleaned off of the PVNS is pants group Face Book page. It appears that one person feels that I have violated the FB rules by taking that info and mapping it. Seriously if I am doing a map for people on the site who have already posted their location how am I violating the rules?

I changed the  map so that it is not a searchable map unless the URL is given . So that should allay some concern since the main population to reach the map will be via the PVNS is pants page on FB or off of our future web site. 



It never fails that when you attempt to do something that will have a benefit to others there will ALWAYS be someone to try and stop your efforts. Here is the thing with that. . . Thanks but NO you are not stopping us. We are on a mission to spread the word about PVNS and we plan on getting our disease listed with NORD (National Organization of Rare Diseases) and getting our organization up and running. 

With only 1.8/million people out there suffering with this disease it is imperative that there be an organization to gather data on patients and physicians fund research and educate the public. Education is key ! 

We are working hard and my apologies if you are offended and feel your privacy has been violated but YOU were not on the list! Just so you know.

Whoo hooo!!!

I am so excited! I have been wanting to make a map of where people with PVNS are located and just this morning discovered that Google has an easy to use interactive map available! Yay Here is my link to my map please add yourself if you too are a member of the 1.8/million who suffer from PVNS.


https://maps.google.com/maps/ms?msid=201535000900517729405.0004c3aafac21790224b3&msa=0&ll=39.859155%2C-84.127808&spn=1.151146%2C2.469177

Wake up and start writing

I love to read the Psychology Today blogs http://www.psychologytoday.com/ and there are 2 authors on the site that have me hooked. Pamela Madsen is an Infertility expert who was married for 23 years and one day decided to begin a journey to discover her own hidden desires. She ended up writing a book about the experience, Shameless How I Ditched the Diet, got naked, found true pleasure, and somehow got home in time to cook dinner. . I really enjoyed her story and have really gotten a kick out of following her blog Shameless Woman http://www.psychologytoday.com/blog/shameless-woman Her passion has now morphed into a web community called Shameless Community. http://community.beingshameless.com/. 
Feel free to step outside of your comfort zone and check out her work. She is worth the read.


The other blog that I read is Snow White Doesn't Live Here Anymore by  Gina Barreca, Ph.D. She is an English Professor at the University of Connecticut. She is also a published author and I need to check out her book as it sounds wonderful It's Not That I'm Bitter: How I Learned to Stop Worrying About Visible Panty Lines and Conquered the World. I need to add this to my library list. I don't read her work on a daily basis but it amuses me to catch up on occasion and see what she has written lately. Tonight I read a post called "How to tell if You're A Real Author". As someone who thinks being a published author would be the life, I am quite taken with any thing that will lead me in the right direction. To simplify her advice write and get published~ sounds simple. Those who write and get published are real authors. The rest are just scribblers. 


Well at present I am a scribbler. I have nothing published, at least not that I am aware of. . . although one of my English professors at Antioch wanted a copy of my paper once to use as instruction for other students. I am not entirely sure what she did with it. Regardless it takes the dedication of a determined person with a story to tell to become an author. I would need to take the time to sit and write on a regular basis to even come close to being able to reach that level. 


I admire people who seem to brim with stories, as someone who was not allowed to read any fiction as a child I am drawn to the genre now and can't get enough. This is part of the reason I don't write often...I am absorbed in the lives of the characters that someone else has dreamed up. I find that pausing my mind during the day is difficult as there are just too many things clamoring for my attention. Or maybe I am more easily distracted, whatever the case it is when the sky is dark and I should be sleeping that I am finding it is easiest to put my thoughts down. 


Lately I have had many hours awake when I would normally be sleeping. I am not sure if the pain in my hip is something new (other than the fluid that they saw on my MRI on the 12th ) or is the PVNS doing some other strange thing to my hip (even though they said the MRI showed now recurrence). All I know is I can't sleep because I am hurting. I wish I could say it was only my hip but everything hurts both hips, the left is definitely worse, both shoulders, the right is worse and my hands... ugh both hands are painful after grasping the steering wheel all day. I am going to make an appointment with a Rheumatologist, I think that I need to find out if I have Rheumatoid Arthritis along with the PVNS. That might account for the systemic pain. I am back to taking Tylenol 3 for pain control especially at night and trying to stick with regular Tylenol during the day. I find that as long as I stay active during the day I don't hurt as bad..that is until I am forced (by a long drive or the need to sleep) to be still...then the pain intensifies and I wake up miserable and occasionally in tears (it sucks to wake up crying). 


Well enough wa wa wa at the moment...time to get some sleep! May each one of you have a peaceful rest tonight.