Practicing what we preach is Easier said than done

It is difficult to do what we tell others especially if something is hurting and making the decision to practice what we preach will cause more pain. 

I am specifically speaking about my insistence that if it hurts to move we should move any way. I have fussed at my mom, my sister and my grandma for years telling them that sitting all day is part of the reason that they are hurting and they "need to move". However I am finding that since my visit to the Dr. last week and having had the MRI that confirms the fluid in my hip joint I have been following the conventional advice of resting and taking Ibuprofen along with alternating ice and heat. Unfortunately it has proven to me yet again that by not moving I am making things worse and I must keep going. I could hardly walk around the 2 blocks near my house after having a restful day. Enough already tomorrow I am going to make a concerted effort to stay active all day. It is much much easier to do when I have a busy work day. 

Today was a bit slow and I ended up spending the afternoon knitting. Yep call me an old lady but I love to knit and I am currently working on a really cool sweater for my oldest niece Becca who is going back to Washington DC in a couple of weeks and I am trying to get it finished before she leaves for school. This is only the second project I have ever done following a pattern so it was very intimidating at first but has gotten fairly repetitive as I have gone along. Last fall I was on a sock kick and made 8 or 9 pairs of socks and gave them to friends by the end of the 9th pair I was really sick of making socks! I love how they turned out they are made from Alpaca wool and are warm and fuzzy which is perfect for a winter night. 


While I knit I catch up on shows that I have recorded today was a RuPaul Drag U afternoon. For those who have never seen the show he can seem frivolous but it is interesting to see the words of wisdom and the wonderful advice that his "professors" give to the women who come on the show. I don't know if any of them have any training in Psychology but most of the advice they give is sound and well thought out. 
 


Here's hoping your day is blessed and peace abounds in your life!
Namaste' 

Misery

They say misery loves company thus the reason for this post. . . I am in pain and completely miserable today. There are multiple reasons for this that are all making it difficult to sleep tonight. 

First and foremost is that I have a build up of synovial fluid in my hip joint. This is the same hip that I had surgery on in January and the fluid was discovered on Tuesday when I had an MRI. I initially thought I was sore from just over doing it last week climbing ladders and working on the house. Now I am wondering if my PVNS is just having a flare up and if this is the joy that I am facing for the future. To top that off I have a UTI...never fun on it's own but combined with the hip pain makes me miserable. 

Enough whining.  
I woke up and took more pain pills so while I wait for them to kick in I thought I would ramble. 

It is a frustrating world that I have joined becoming one of the 1.8 in a million who share the PVNS diagnosis. Doctors either 
1) don't know about the disease 
2) know all about it and don't care
3) are the Cliff Claven of the business and know just enough to be dangerous
4) want to use us as experimental objects. 

Give me a break. . . I understand that as Doctors it is difficult to know everything about all diseases and because PVNS is so rare most have never even heard of it. But what I want to see is not what I got from the Orthopedic Oncologist which was the "Suck it up" attitude and deal with it until you get a replacement hip at which time the disease will not return. The smirk on his face while he told me what he thought did not help matters in the least. 

I used to listen to my sister complain about all the doctors she has been to over the years who would not listen to her and basically wrote her off as being a hypochondriac or a drug seeker... when in reality they had no clue what was causing her symptoms. I don't think that I was all that sympathetic either maybe I thought that she was doing exactly that which is sad but true. She has been on disability for years and has just recently found a doctor that is listening to her and is taking her seriously. And she found that Botox treatments have cured her 2-3 week migraines.

It looks like this is the journey I am embarking on as well ... The search for the Doctor who will take me seriously. I should qualify that by saying my family doc is very sympathetic (he is also my former brother in law) and he says it is very difficult to manage. 

However I feel like I need some kind of expert to "manage" or "follow" me for treatment. Maybe that is not true but it seems to me that having a "point"person is a good idea. I hate having to start over and explain again what is going on with my hip. I thought that by going to the Orthopedic Oncologist (who I was referred to after seeing my family doc who referred me to a local Ortho doc who then referred me to the Ortho Oncologist) that I was making the best decision based on what others I have chatted with have recommended. Even my Orthopedic surgeon wanted the Orthopedic Oncologist to "follow" my case but essentially the Oncologist wants nothing to do with me until next year. In the mean time who do I go to for flare ups more problems etc. 


It sucks to be told that this is "just a benign disease and is not life threatening. True but it can become extremely debilitating and can completely alter the lives of those who are suffering from it. I know know of 3 young ladies who are all 10-20 years younger than I am who have already had hip replacements. Seriously...this disease can DESTROY the joint and I am being told to just suck it up. I am generally good about dealing with pain and not letting it stop me from doing what needs to be done HOWEVER there are days like today that I have just had enough. 

I have joined a group on Facebook which is a meeting place for those of us who are battling PVNS called "PVNS is pants" (which I believe in the UK means PVNS is shite). Interestingly almost all of them are dealing with the same doctor problems that I am regardless of where they live the battle remains the same. So I know the problem is not strictly mine and it is very helpful to see that we are all in the same proverbial boat.  


A friend on Facebook posted today 
"Hard to explain to someone who has no clue. Or doesn't believe you. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible or not-so-visible illness (Pancreatitis, Crohn's, PTSD, Anxiety, Bipolar, Depression, Diabetes, LUPUS, Fibromyalgia, MS, ME, Arthritis, Cancer, Heart Disease, Epilepsy, ADHD, Autism, M.D. Evan Syndrome, and Neuropathy.) Never judge what you don't understand."

 Of course PVNS is not on the list there nor does it happen to be on NORD (National Organization of Rare Diseases) or on the CDC's list of rare disorders. 1.8 per million is not a lot of people...I would love to see us start an organization and have a gathering maybe with local chapters in which we can meet face to face. It is time to unite and make people take us seriously.

A visit to the Doc

Here is an update to my journey via my FB post~

It was a really LONG day! I went for a 10 AM appointment with my Orthopedic Oncologist and arrived half an hour before hand. . . but did not see Dr. M until 11:30. The nurses were great but his PA was a jerk. He (the PA) came in and asked why I was there... had I had the arthroscopy and asked how my hip was feeling. He had an attitude towards me the minute he came in the room.

To which I replied yes and I am still having problems with swelling, pain, clicking and grinding. He then proceeded to tell me that there was not much they could do without an MRI (NO SHIT SHERLOCK) OMG!!!

Any way that is why I had kept the appointment because the message I had gotten previously via Dr. E (the surgeon) was that Dr. M did not want to do a 6 month follow up MRI and that there was no reason to keep the appointment. Dr. E wants Dr. M(Orthopedic Oncologist) to follow me for the PVNS thus the appointment today which is 6 months from the surgery. I wanted to make sure he (Dr. M) ordered the MRI because the hip is not feeling right and I am limping again.

So shortly after the annoying PA left, he and Dr. M returned and we discussed the options, which in his mind are basically letting it do it's thing because "this is a benign disease and there is NO reason to put yourself through any treatments like radiation, Gleevac or Yttrium". Essentially he said Suck it up!!!

He did agree to get the MRI and they had time today so I went over to another building and had the test and then went back to his office for his take on the exam. Lucky me. . . I don't think he was thrilled it was today but it saved me another trip to Columbus.

The MRI shows that there are no PVNS growths at present however I do have an Effusion (fluid) around the ball of my hip. And he figures the grinding and clicking are attributable to scar tissue.

No solution to this other than anti inflammatory meds and rest. Follow up in one year and he specified that I schedule the MRI a day before coming to see him! HA ~

Hello Again

It has been ages since I have had a chance to sit down and scribble (old school terminology). After my last post when I was feeling very zen and peaceful Life jumped back into being it's chaotic self. And my stress level is up and my time in the pool was limited. Missing my swims is definitely a problem as I find the time in the water centers me and keeps me feeling more zen. 

I am very much a stress eater and I find the more hectic life gets the more I want chocolate. So the last few weeks I have gone back to being self destructive and chowing on chocolate. Today I stopped at the mall and got my favorite "Double Doozie" Chocolate Chip cookie. For those who do not have the Cookie Company near by it is a cookie sandwich with icing between two cookies. YUM. One can put you into an insulin coma but I had 2 of the darn things. The lady at the counter made the stellar offer of buy 3 get one free and since I was with my friend Judy it sounded like a great deal. Unfortunately I did not make it home with my 2nd one ... yep got stuck in traffic and broke open the bag and ate it!

So the chaos in my world was precipitated by having a dog who is terrified of thunderstorms and who has lately taken to eating the drywall when upset. Unfortunately, I was not even in the state when he caused the most damage. He was home alone during a storm and I was working in IN and my younger son who was living with me was at work. He came home to find that Blaze, the culprit, had bitten a hole in the toilet tank hose and had caused a flood. On top of that he had bitten holes in the closet door and had chewed a corner of the drywall. A friend suggested that I call the insurance company and I am very grateful for his suggestion because as a result of the flood I ended up with new flooring. Thank you Allstate it pays to keep paying your premiums! 

On top of the flood there was drywall damage and when I started to tear out the wall (I did the drywall repair myself). I discovered that there was mold inside the walls. YUCK. 

So after almost 6 weeks the chaos is over I am sitting in my new office...younger son moved into an Apartment and I now have a lovely room which I painted a pale yellow with green curtains a new ceiling fan and a lovely rug with palm trees... a very zen room. And I made it to the gym this morning. 

I am going today to see the Orthopaedic Oncologist in Columbus, we shall see what he has to say about the PVNS. Everyone that I am finding who has this disease as well has been getting a 6 month follow up MRI. However he did not order one so we shall see what he says the next step in managing this disease is and where we are going from here. Most days I feel good but lately I am having a LOT of swelling clicking and pain. It may be related to all the ladder climbing and home repairs that I have been doing but I am limping quite a bit lately. We shall see. Thinking positive thoughts!

Night all going back to bed!

The den with new carpet!!

The dining room /living room area  with no furniture in the living room. 

 

Blaze the black boarder collie is the one who caused the damage. 

MY new office!

Peace in the Pool ~ Serenity in the Sauna

I have been writing this post in my head for several days. . . and things keep getting in the way and making me forget what the heck I wanted to say! 

Which of course ties right in with what I was thinking... namely that this world has too many distractions and it is hard to take the time to concentrate on any one topic for long. We live in a world with constant stimulation and it takes a concerted effort on our part to find a place to have time for piece and quiet. 

It is odd, I know, with as much time as I spend alone in the car for work, you would think that I could spend hours contemplating life, liberty and the pursuit of happiness. Unfortunately driving requires concentration skills that on long drives seem to be remote and automatic but at the same time they prevent me from getting too deeply in my head. I listen to books on CD instead to keep my mind occupied and still allow myself to focus on the road. 

I found one such place of peace at the pool. The only sounds in the pool area are the pumps and HVAC system ... water splashing if someone else is in the lanes next to me swimming. But generally it is so quiet that I can focus ... although with my compulsive need to count that doesn't always last long. Yes I count steps over and over again ... I don't believe I fall in to the OCD category, but I am compulsive about certain things. Counting is one of them ... OK so now you know another oddity about me. 


Back to the peace in the pool ... so in the time I have spent there I am finding myself thinking about life and options at this point in time and I have decided that it is the most zen place I know in which to think. People in the pool doing laps do not chat with one another other than to say hello or ask if another person can see the clock (yep I am blind). So the hour I am spending in the pool gives me plenty of time to consider ... well between steps ... what is happening in my life. 


I have also discovered that the sauna is a serene place where no conversations take place (normally) and since I am lying still it requires no counting of steps. Of course I still have a brain that is like a hamster in a maze jumping from one thought to another. But maybe that is normal, even without external visual or audible stimulation we still are capable of distracting ourselves. I have often wondered if this occurs when we come too close to the truth about something so the "universe" bumps us in another direction to distract us. If we are focused on the task we will keep coming back to that thought and eventually make sense of where we were going. 


I wonder how philosophers of the past could focus so intently on their given tracks of ideological thinking and remain so focused. Was their world so much less visually or audibly stimulating or were their powers of concentration so much better? Maybe I am just easily distracted...ADD? 


I have a friend who is the lead singer in a band and I got to hear his band preform in Cleveland last fall. After the show his mom, brother and his girlfriend and I spent and hour with the guys in their travel trailer. One of the guys came in put on his ear phones and got on his computer and started writing more music...sitting right in the same space where everyone was chatting and laughing and his ability to focus on what he was working on amazed me. He was able to pay NO attention what so ever to what we were doing. I do not understand that kind of focus. . . it is so foreign to me. 


Computers make it difficult for those of us who are easily distracted...I keep 5 tabs open on my ISP at all times. They are BBC News, Yahoo, Work, Facebook and Psychology Today. Now here is the problem... if I leave myself logged into Facebook while I am on the work tab and I see the little pop up that there is a message I HAVE to check and see what it is. . . which leaves me with only one option ... log the heck out of FB while I am working. At the same time I frequently feel compelled to check what is happening in the world via the BBC and generally want to share what I have learned via FB so I end up logging back in and then the vicious cycle begins again.


I think that it is fairly normal for people to be distracted, or is it, what is normal any way? Isn't it overrated? I like to be unique and pride myself in being different than other people. It may just be my stubbornness but I hate to follow the crowd. Adriana, my future daughter in law's daughter was commenting on her outfit today saying that the current trends are just repeating the 80's and the shirt she was wearing would be out of style next year. It is crazy that at 10 she is concerned about fashion and what is in style! I am not a style maven and don't give a rip about what others say is in style personally I think some of the stuff that fashionista's say are stylish sucks! But I digress...


Back to the pool...so what have I learned ... I am thinking about going back to school. Yep again... there are a couple of things that interest me but I am not sure where I would go with them. Still checking it out I will keep everyone posted on any forthcoming decisions. 

I did stop by Antioch Midwest and pick up some information on the IMA (Individualized Master of Arts) programs. I need to discuss it further with a couple of instructors and see where I might possibly take this idea. I have an plan but will need to narrow the scope of said plan to make it a manageable degree. So I have made the first step. We shall see..... :)

Our World~ we are connected

Just this week a video released by the organization Invisible Children became viral on You Tube. In this thirty minute video the group makes everyone aware of the atrocious behavior of one Joseph Kony. For the last 26 years he has led a group called the Lords Resistance Army who have specialized in mutilation, kidnap, turning girls into sex slaves and conscripting young men into the army. These are the facts and they are undisputed.

What makes me very sad is some of  the responses to this video. Americans are very self focused and in my mind willfully stupid. Now many people are decrying the efforts of the group Invisible children and asking why isn't someone paying attention to the problems here in the USA, who cares about the African children who Kony kidnapped, raped or mutilated. They comment on the fact that he  (Kony) has been at this for years which is correct but the evidence has not been presented to us in a format that has caught on . 

In a world of willful ignorance where sport is god and free time is given to that god, little time is left for the average American to care or to educate themselves on what is happening on the other side of the world. That said media is a fickle master and it is the story of the moment that holds the attention of the puppet masters.

These same people who are upset about the attention this video has generated, want us to focus only on the events with in our borders. This would be a return to Isolationism, a task in a "Globally connected world which is virtually impossible today. The only way for us to return to an age where we are completely isolated would be for a catastrophic EMP (Electro Magnetic Pulse) event to occur, and if that were to happen life as we know it would end. Human beings could survive but only the intrepid and savvy who did not spend every waking moment in front of the computer or videos will succeed.

The group Invisible Children has finally captured the attention of the world the politicians and the press. Yes the man Kony is EVIL and Yes he has been at this for a long long time. And maybe this video is not the answer but it is the beginning of the conversation, and without the conversation we cannot get resolution. 

Remember every journey begins with just one step.

Mid life = The Age of Discontent

Everyone has heard about the "mid-life crisis" and when I think about this term I imagine a guy driving a red convertible wearing a shirt with the top 2 or 3 buttons undone and gold chains around his wrists and neck. This same image evokes a feeling of a slimy bastard trying to hit on  the younger version of the current wife, the one that is at home raising the kids and keeping the house. I think it is sad that this is what I imagine when I hear that term. What I am finding as I get older is that EVERYONE faces a mid life experience and maybe it is not a "crisis" but there is definitely an event or series of events that makes one sit back and take stock of their lives. 

I recently turned 46 and in chatting with my gal pals I am finding that each and everyone is questioning what they are going to be doing for the second half of their lives. The current life expectancy for the United States of America is 71 years for men and 80 years for women. This means that I am past the middle of my expected life span and I am on the "downward slide". I know without a doubt that I will be working in some capacity until I die. The question I wonder is will it continue to be in the current field I am in or will I be doing something else?

Each of my friends who are questioning life have worked for years in steady professions and are ready to do something "new". Some are contemplating returning to school for more education. Most do not want to continue in the same profession but are looking to learn something completely different. 

One friend is a self employed person and she was telling me the other day that she wants to become a nurse. I had two gut reactions to this statement 1) you are too old to become a nurse 2) you will never be able to do it because nurses are on their feet for a large portion of their shifts. Another friend who is a nurse has physical problems and really needs to find another job but cannot afford to return to school. Another has never been to college,  but in the current environment where the piece of paper showing you graduated means more than 20 + years of experience she cannot find a job that pays enough to support herself. 


It is frustrating to watch as everyone struggles with the changes that are occurring in the job market around them and the fears that accompany those changes. The ones that I have identified in chatting with friends are as follows; 
1) Will "I" be a viable competitor in the job market?
2) What do "I" need to do to compete against people who are 20+ years younger who grew up in the computer age.
3) How will "I" pay my bills and keep a roof over my head if I change jobs.
4) How will "I" manage with physical health problems as changing careers will mess with my insurance and "I" can't afford to not have insurance.


When life expectancy was much less these issues were not ever an issue. Men went to work and stayed in jobs for 30+ years doing the same thing day in and day out. That is what they knew and it was what they did. Today with both women and men working and the job market changing constantly people are moving from one career to another every 5 to 7 years and maybe that is what my friends and I have done wrong. We haven't changed jobs and moved frequently. In the company that I work for a large portion of the service reps have been with the company for over 20 years each and there are several who have been with them for 35 years. This longevity speaks more to the stagnation that occurs when one does not make the move to new company than it does to the employee desire to be loyal. They remain in the same place because they are paid just enough and given just enough vacation and benefits to keep them there, and that is it.