Letter to a Family Member of a Sarc Sufferer
I am so sorry to hear that your loved one has this disease. Sarcoidosis is such a strange one. It seems that in some people it will run it's course and then burn itself out in two to three years. I have been told by my Doctor, who is a Hemotologist , that they do not know why in some people all symptoms just go away in two to three years and in others it becomes Chronic. These are the ones that become very hard to understand.
Because the person may look just fine but, yet there is a war going on inside of their bodies. Our Immune system is at war with our vital organs such as lungs,
heart, liver, brain as well as the spleen, pancreas, nerves, lymph nodes, glands, muscles, connective tissues and eyes.There are many symptoms that may keep popping up and then go into short remissions. Some of the symptoms include:
Fatigue (being tired all the time. NO Energy)
Muscle weakness
Shortness of breath
Coughing
Feeling achy all over
Headaches
Blurred vision
Hearing problems
Rash and/or lumps on skin.
If you have ever had the flu, it sort of feels
like that only it doesn't go away. Some of us run low grade fevers and have chills and night sweats. And there may be times that they have no appetite and/or feel nauseated. We have mood swings, feel like everyone is against us and no one understands.
It is in our blood stream and can and does go
everywhere our blood goes throughout our bodies. It can attack more than one place at a time. It is not a prejudice disease, it affects, young, old, white, black and any ethnic background, male, female and anywhere
in the world. Even tho we all have this disease it affects us each differently. We are sort of like snow flakes, no two exactly alike but, all the same. Sort of confusing isn't it? Well, don't feel bad it is
confusing to those of us who have it too. But, I want you to understand that it is Not the end of the
world.....it just means that we have to just
take one day at at time and learn to listen to our bodies and take frequent rest periods. We just need you to be there for us and try to understand and not give up on us. If we tend to be moody don't take it personally. It is so depressing and frustrating because this disease causes us to have limitations and it can take away our once active lives and there are times when that really gets to us and it ishard for us to accept that. We don't mean to take it out on you. That is why it is so important to us for those who love us to understand what we are going through and even tho we may look ok
we aren't. We are sick on the inside.
I have heard lots of stories where people with this disease are left to fight it all alone. Because their family and friends think that they are a
hypochondriac because we don't "LOOK" sick (Remember we don't have to LOOK sick to be sick)
or lazy because they can't do the things that they used to and because they are always saying they have no energy or feel achy. One of the most frustrating
things to us is when our own families don't believe us. That hits us in the heart. No one WANTS to be sick! So, please try to understand that we can't help that we aren't the way we used to be. Just be there for us and know that we would love to be able to be the way we used to and be. And able to do the things we used to do with all of our family and friends. Thank you for reading this. I hope it helps you to understand this crazy disease a little bit more..but, most of all I pray that it will help you to be there for your love one who is suffering with this monster disease. We really need the support of our loved ones. So, Please just be patient with us and try to understand. We need your love and support to help us through, especially the rough spots. Remember that no one WANTS to be sick.
Hugz to all,
Kipy
(Founder and Manager)
To learn more about what it means to live with a Chronic Illness like Sarcoidosis. It's not as easy as you think.
