Simply danLrene's Opinion

Work Your Dream

Older Than Dirt Wisdom About Medical Issues

small simply danLrene

I get asked so many times how I keep such a positive attitude with all I have wrong and the answer it always …because I choose to be positive. I have certain things I live by for my life and am going to list them with some information with it. I have been sickly since I was 31, on disability in my early 40’s and am going to be 65 in May. That is a lot of experience dealing with the medical profession and chronic illness and disability. I often share my experiences and what worked and what did not with others and find a very small number get angry because they do not want to hear it and the rest like it or agree with it or are glad to hear it. So, take your pick. I believe in learning from those that walked the miles ahead of us. That is how I learned.

1. On Research…I do NOT spend hours a day researching on the internet for information related to my illness. I do look up things so make sure I am clear on what the doctors have told me but I find that researching your health can become an obsessive thing and when it does become obsessive, you are losing hours of your life just by focusing so hard on your illness. I know what I have and I know what it does to me and I look at it as my job to make it through it all and most of all, to make it through happy.  I am not my disease and I find that what you give the most thought and energy to, you become.  I might be chronically ill and disabled but I refuse to let it steal all of my life. My second thought on research is that far too many people start looking up what their tests say and see one thing and decide that is what is wrong even before the doctor has told them anything.

Some diseases such as auto immune disorders, the test also covers other diseases and takes a medical doctor to tell us what the tests are actually saying. And auto immune disorders are not just one symptom. They consist of multiple symptoms. You can have skin issues without it being an auto immune disorder and you can have them with it being an auto immune disorder. If we just assume that is what we have and start talking as if we are already diagnosed before we are, it can cause problems in the long run and be embarrassing because then we have to backtrack and say…uhhh no, that is not what I have. I see people who will research and start reading all the symptoms you “CAN” have with such and such illness and decide they have ALL the symptoms. Sorry folks, but just because they are all listed does not mean you automatically have them all. It just means it is possible and sometimes it is very rare they happen.

I had to laugh because a person I know in another state read up on Fibro, which she had for several years. And she saw dizziness and a couple of other things on the list and suddenly she had dizziness episodes, etc. And she got furious because her doctor’s response is that they needed to run some other tests because she has been sick with Fibro for several years and never had dizziness so he did not feel it was the fibro causing it.

2. Medicines and Treatments….if I am going to go through a treatment or take meds the doctors give me, then I am going to follow through. I hear so many say “I am not taking that med, it makes my hair fall out.” or “I am not taking steroids because it makes me fat.”  I often wonder do they realize the doctor can take one look at you and know you are not following what he prescribed. Which is more important…..feeling better, less pain, etc or looking good? And when you answer that you will know why some doctors just assume you are not really sick. Let me tell you, I am so sick that if it will help me…I WILL do it because that is how much I want to still be here and to feel better. Who cares if I lose some hair? Who cares if I get moon face from steroids?  I certainly do not because I am after the benefit first.

3. Hysteria and Crying when sick or in pain…my views.  I do not do either one of those. That does not mean tears do not quietly roll down my cheeks when pain is so high. I have just learned that both of those things only increases your symptoms and pain and that slow, regulated breathing and staying calm help me from raising my pain level by my emotions. I watched people in pain clinics have hysterical crying fits because the doctor wanted them to do alternative things to help lower their pain level when all they wanted was another pain pill. And when they left crying hysterically, their pain was zooming off the charts and I would hear them say “See, I am getting worse.”

I know we chronically ill hate to admit that our emotions can affect our health and symptoms but they can. It is very evident by the number of people under stress or who are upset that get stomach aches. There is nothing physically causing it, just the stress causing very real symptoms.  So, it is not always saying someone is a hypochondriac when a doctor starts talking about how stress affects your health. Our emotional, spiritual and physical must work together and each affects the other.

4. Talking to Doctors….if you are not comfortable talking to your doctors then you need new ones. I am blessed to finally have doctors that listen to me and discuss with me. I have only taken something from online one time in my life and it was a picture of legs with the exact same thing I had on my legs as the doctor and I both could not figure out what was wrong. But, it was an IMAGE, not just some words from support groups of people giving their views or from sites that are not reliable.

I believe that if you want to turn your doctor off and make him think you are not really sick, start taking stacks of papers to them of all these things “friends online” have told you and unreliable sources have posted. I am not talking about that big stack of your records that you carry when you start a new doctor. Those papers are necessary for setting yourself up with a new doctor.  I am talking about all those who spend hours researching and print off stacks of stuff to take to their doctor to try to prove this or that is wrong. I have learned that most doctors do not like that and it affects their view of us.

I do know my body and what it does and that is important. It helped me when we discussed my thyroid issues as I have nodules all over my thyroid and it causes my thyroid levels to fluctuate. I was able to tell my doctors that even though .5 to 5 or .3 to 3…(depending on which doctor is telling you) is normal, I did better at between a 1 and a 2. I was not as exhausted, my hair was not brittle nor my skin as dry. And that is where we try to keep me. I also know that my doctors are trained in things I have no concept of and I need to listen to them.

5. Living Life.…I believe that we are either victims or survivors and have said many times that survivors focus on solutions and victims focus on problems. I am a survivor and so my focus is on finding ways to live with, deal with and work with the health issues I have. I do not believe in focusing all my time and energy on reading about what is wrong. I KNOW what is wrong. I want to live my life the fullest I can and I want to do the steps and solutions to make my life better. And I am a big believer in laughter for it releases the right endorphins to help make life better.

6. People Offering Suggestions or Making Compliments: I hear chronically ill people complaining that “HATE” when people tell them they look good or do not look sick. Personally, I love when they do that for it means I look better than I feel and to me that is good.  Why would someone want to look sick?  I do not get it. I want people to see me..quirky, funny, happy me not some disease. And I always wonder why some people are so sensitive to it that they let it take joy from their lives.

I can remember a time when I first became ill before they diagnosed me and I felt that way and the reason was I was feeling insecure about being sick because I felt like I had to defend how I felt since I had no diagnosis. I learned to say to people who told me I did not look sick the following:  “And that explains how hard some things are to diagnose. Because I do not look sick does not mean I am not sick on the inside” and let it go. You can not force anyone to believe you. The only one you can control is you and how you let others make you feel. You are sick and they are not your doctor so why should I care about what they say?  They had to eat their words later on. And it does not bother me when people offer suggestions because I am thankful that they care enough to do it.

Yes, you will always have some that want to make some comment about what is wrong and those are the ones I just smile and ignore. Why waste the energy on anyone negative. I think again that people can become so sensitive to what others say because they are feeling insecure and thinking no one believes they are really sick. The first person that has to believe is myself and if I am showing everyone that I am so sensitive and not confident on how sick I am, then how can I expect them to believe I am sick too. I do not try to explain to people what is wrong. When asked, I will tell what is wrong in brief terms. I do not have to convince them. You can not explain to someone who has never been there. It is like trying to tell someone what being in a house fire is like and they have never been in a house fire.

LIVE life, LOVE life and LAUGH as much as possible. Life is too short to focus on the negative things in life.

April 23, 2014 - Posted by | All, Uncategorized | , , , , ,

2 Comments »

  1. Such great advice! (Internet research can drive you nuts….like you say, suddenly you have that symptom…happens to young docs in med school even – that give you a giggle?)
    Do what the doc says! Talk with them if there’s problems – don’t go your own way – frustrating for everyone involved!
    Best of all is that find a doc who you can talk with and works for you – so true!
    Your a delightful spirit.

    Comment by philosophermouseofthehedge | April 23, 2014 | Reply


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