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.

It is a good thing I sleep with my animals

Ok, I know that this sounds really crazy but it is a good thing I am alone and don't share my bed with any other human! I really don't understand how people sleep side by side. My oldest son can't sleep unless his girlfriend is right next to him. This cracks me up, but works for her because she sleeps better with him beside her. They are so darn cute together! 
 
I am rarely, no make that never alone, since I have 4 cats and one dog that rotate in and out of bed with me. Only one of my animals does not make any effort to get in to bed and I think he came from a house where he was punished for getting on the bed. The one time I tried to get him on the bed he completely wigged out. 

But I digress...I do have a point. I am in more pain at night than I am during the day when I am moving and my joints are not getting stiff. This pain is the reason that I am such a poor sleeper and toss and turn so much at night. I also moan and groan in my sleep which wakes up the animals who then get in my face and yowell until I am awake and wondering why I am not sleeping. 

Today I was busy all day and skipped lunch so that when I finally got dinner at 6PM I was very hungry. I had a lovely Fried Chicken salad and an Amber Bock beer and came straight home. Unfortunately I was not feeling well when I got home. The best way to describe it was the way I used to feel after eating a high carb breakfast and then going into a carb loaded coma. I came home put on my pj's and went straight to bed...mind you it was 7PM. I know that the salad was not loaded with carbs other than the breading on the chicken and the crouton's. So it must have been the effects of the beer. 

I thought a drink would help with the pain today....I have been trying to get through the day with out meds and hadn't taken any since about 4 AM. However this is stupid since I went to the gym and swam in the morning, worked in my home office until 2PM then went to a local surgery center to work for 2 hours, then came home and walked the dogs. 

Maybe I just over did it? It is so hard to tell what is too much. I was actually feeling fairly good most of the day and was busy enough that the pain was not too bad. Lesson learned I am going to have to stick to tea and take my pain meds.

Back to the reason it is good to be alone. Pain at night = restlessness = lack of sleep = a partner wanting to kill me so it is good to sleep alone. Besides it is my damn bed! Ha! 

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!