Say What? Hiring a doctor? Yup, that’s what I said. Did you know that many doctors seem to forget that we in effect “hire” them for their services? They fit the definition of an employee, or sub contractor even because we pay them for their time and services rendered. So, why bring this up? Let me explain…
When you have a chronic disease, like lupus, you become well versed in medical terminology, procedures, testing, and of course medications. It is par for the course due, in part, to the fact that depending on your disease course you will be under the care of different doctors for different things that can arise.
For example, I see my family practitioner for everyday things like colds and flu. I see my rheumatologist for my joint pain and other “lupus” related things. I see my neurologist for the brain associated effects, like periphreal neuropathy and migraines. I have also seen orthopedic surgeons, general surgeons and a host of ER doctors. I also see a therapist, because I am depressed. Go figure.
In the course of this disease, it is important for all the doctors that you see to share their information with each other so they can all stay on the same page as it were. Otherwise, you may find that medications and or treatments may be harmful because one does not know what the other has prescribed.
Here is where the hiring comes in. You need to see a family doctor. If the one you currently see feels the need to belittle you or act as if your disease is not real, then fire them and find one who listens and is proactive. Same goes for all the other doctors you may see. I personally have fired a few doctors in my time. Right now I am awaiting an appointment with a new neurologist for example, because my last one did a slew of tests and whenever I tried to get in to see him to discuss the results, there was always some excuse for having to reschedule my appointments. So, I got a new one and I hope he is a good one. Time will tell.
If you learn as much as possible about your condition, then you are a well informed consumer and are able to discern whether or not your particular doctor is right for you. If your doctor does not like the fact that you are well informed, then find another one who does. This is YOUR body, YOUR disease, and YOUR treatment. Not the doctor’s. Knowledge is power. A good clinician will not only encourage you to become informed but will welcome any questions you may have about a certain treatment or procedure or medication without making you feel stupid. Yes, some doctors seem to like the POWER, but YOU are the one paying them so if you are not comfortable, find another one.
When dealing with a chronic disease it is important to remember that YOU are the most important player in this game. Your team consists of your doctors, nurses, support groups, therapists, friends and family. Making sure they all share their information is one of the most important things you need to do in your managed care of your disease. It is vital to stay on top of it, even if it means the occassional phone call or appointment to discuss the finer points of your treatment.
Ultimately you are in control of your care. Being a well informed patient has never been more important than now, when you are dealing with a chronic, non-curable disease. Stand up and be assertive for your own health and well being. No one knows how you feel more that YOU. So if that doctor acts like it is all in your head (and yes, I had a few who mentioned it must be because I was a woman looking for attention) then RUN out of that office and find one who listens and respects your symptoms and who wants to find out why! I did and now I have a pretty good team assembled. It is up to you to take care of this.
A friend of mine suffers from this so I wanted to share the information for all to read and learn. Thanks to Renee Proctor, and all the others who deal with this for being brave enough to share this information with others! This information came from www.dystonia-foundation.org.
What is Dystonia?
Dystonia affects people of all ages andbackgrounds.Photo courtesy of Blind Dog Films.
Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.
Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no less than 300,000 people in North America are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.
Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.
Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications.
Ok, I know that I am not immune to stress…we all have stress. Waking up in the morning is stress. Eating food can be stressful. The whole world is filled to the brim in stress. I mean, we are literally swimming in it every moment of every day. Just once, though, I would like to say something like this…”Stress is not welcome here, go away!”. I know, wishful thinking indeed. So, bring on the stress wolfie…I can take it….
There are stressors that we get without trying at all. Here is an example… just because I have kids, it is a given that there will be things like car accidents, drama and such. Stress also does not magically stop when they are adults, the stressors just get bigger and more costly.
Our parents are aging too. It is that time of our life where we have to think about and act on taking care of our parents as they age. We are officially middle age and that is the bridge between raising our kids and taking care of our parents. These two things are loaded with stress, but it is a stress that we expect from the time we are aware of life and living.
Now to talk about other stressors. Having a chronic disease can by itself cause major stress because of the symptoms and the impact on your life and family/friends. When you get diagnosed with a chronic, incurable disease, you actually go through the stages of grief. Yes, as if the old you has died and the new you is trying to come to terms with it.
Today was not a good day at all. Stress began before I was out of bed. It has wound its way into most everything today. Maybe it is me, and I am bringing the stress on myself. I don’t think so. While I am sure that I can shoulder some of the blame, I also allowed others to influence my day with their stress.
In the end, it was a day in which I feel like I should have just stayed in bed, covered my head and maybe no one would notice. It will never happen, but a girl can dream.
Well hey everybody and thanks for the growth of this blog. I hope you are finding the information you are seeking. It helps when I get your feedback too. Please let me know how you are liking or not liking this blog and feel free to share ways to improve it. Thanks for all your support too! Now, onto the blogging…
For the past few days, I have been dealing with a lot of personal issues. I will not go into them but the gist of it is that others around me seem to feel the need to make me feel inferior, like I am not worthy of any good things. It has made me depressed to say the least. I have been told that I need to exercise more, stop eating or drinking this or that, do more around the house, and the one that blew my mind is the one where I was asked about my medications and did all my doctors know about all the medication I am on. Ok, in short, there are some who feel the need to put me down I guess so they feel better. I get it, but it still hurts.
Following the whole doctors visit and not feeling good at all latley, and you see where I am at. Let me explain this in terms a “normal” person will understand. Here is the scenario, you are flat on your back in bed with the worst flu of your life. You feel weak, and tired and sick. You are barely able to get up to go to the bathroom. Got it? Ok, then picture someone coming into your room and asking why you are flat on your back. You explain and then they tell you that if you would get up and run a mile you would feel better, and if you would only eat that one thing and not eat something else you wuld feel much better. Oh, and then tell you that you are supposed to get up and do the housework, cook the meals, and everything associated with your home, all this while you barely have the energy to get out of bed! Factor in the implied notion from this person that you are really not sick but just seekign attention. How would you feel?
This is how it is for those of us who suffer chronic diseases. Some days we are able to get up, and participate in life as usual. Other days, the bad ones, we feel like c-rap and just need empathy. When you hear of someone who is ill do you like to help them out? Maybe make some dinner and take it to them? Call and check on them to see how they are? See if you can help around the house? Many people do this when there is an illness in their social network. When you have a chronic disease, at first some may do these things, but unfortunately, as time goes on, this ceases. That is the difference between acute and chronic.
You know, sometimes, just a phone call to inquire how the day is going and about nothing in particular, can be a lifeline to those who are ill. Letting them know you are thinking of them is an amazing feeling. It makes them feel like there are those who still think of them, even if they are not able to hang out and do what they used to do. Sometimes, just asking if you can help out, and it does not have to be a big thing either, can mean the world to the one who is ill. The effort is well worth the time you will spend.
We hear of random acts of kindness all the time. Well, today I am challenging you all to do a random act of kindness for someone you know. It may be that new mother down the street, or it can be dropping by your friends house and visiting for a few minutes. In our busy hectic lives, we have lost something essential to our existence, that human empathy that makes us interconnect. So in an effort to do this, bake some cookies for your neighbor, visit or call long lost friends, check in on your older neighbors or family, and begin to feel again. I think you will like how you feel and you could make the difference in someone’s day in a positive way.