Wednesday, February 16, 2011

LIVING WITH A CHRONIC ILLNESS

A new journey in my life. I mentioned in an earlier post that I was recently diagnosed with LUPUS. Since I was told, I have spent some time studying up on the subject. I am amazed at all the symptoms that I have had in the past few years that I thought were because of my age, my weight or the lack of exercise, etc etc. 

Today I was asked about the disease by a coworker. This is what I found online.

Lupus is not contagious. You cannot "catch" lupus from someone or "give" lupus to someone.



Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues.


Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS, the immune system is under-active; in lupus, the immune system is overactive.


You can then talk about what lupus is.



Lupus is an autoimmune disease. In some ways, lupus represents a kind of allergic reaction by the body, in which the immune system sees the body’s own healthy tissues and cells as foreign.


Lupus is a chronic disease. This means that anyone who develops lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.


Lupus has many different symptoms, and because of that, affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs. What most people do not realize, however, is how much effort it may take you to function day-to-day when you have to cope with extreme fatigue, chronic pain, memory loss, medication side effects, and/or visible skin lesions.


Lupus is unpredictable because it is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Knowing that lupus is unpredictable may help other people understand your physical and emotional ups and downs as well as the changes that you may have to make to schedules, plans, and commitments.


One of the things in this information that really hit home was the last sentence. I have canceled so many plans and events in the past couple of years that it became a joke about how I just didn't like certain family members or groups of people. I really want to post this on a t-shirt and wear it around so they know that it was beyond my control.
 
I am thankful that I finally went to the dermatologist. I have had this rash on my chest that would come and go for the past year at least. He took a biopsy and it was positve. This diagnosis has really been a blessing. Finally a reason for the fatigue (this is a big one for me), the achy knees, the catching every cold or bug that blew by me. Scott, Mom and my sister really thought I was just depressed and I kept telling them I wasn't sad or blue, I was just to darned tired to doing anything.  It is now something that can be treated. I was told recently that one way to live a long life is to have a chronic illness because it makes you take better care of yourself. I am waiting now to get in to see a Rheumatologist. This appointment should get me on a regime of living a normal life with this.
 
Sorry for the rambling, I wanted to share what is going on with me. Please keep me in your prayers as I begin this new journey.

2 comments:

Amanda said...

So sorry to hear that you have Lupus. Autoimmune disorders can be hard on the whole family. I hope your rheumatologist is able to get you started on a good drug soon. My mom has rheumatoid arthritis and has ever since I can remember, so I understand you wanting to have a t-shirt. :) I will keep you in my prayers.

Sue@CountryPleasures said...

I enjoyed your rambling, learned alot! And I so agree with you, sometimes a illness can be a blessing and I'm so glad your tackling this head on and with a positive spirit! Hugs!