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.
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.
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