Tag Archives: National Invisible Chronic Illness Awareness Week

So Behind on Posts Due This Week

I should have already had my post done for 9/11 but I haven’t done it and the day is almost gone.  My brain is fried from all that I am attempting to get done.  Here is last year’s post.

This is also Invisible Illness Week.  Have I written a new post?  No I haven’t done that either.  I wrote two posts last year.  They can be found here and here.

I apologize for being so neglectful in these two very important items.  So what has kept me so occupied?

  • I have been working on my guest blogs posts and sample questions for the book blog tour
  • I have been working on getting a seller’s permit and a business license so that I can offer my books on my website and sell them at my book launch party
  • I have been contacting companies to get free samples of some products I use for the book launch party gift baskets
  • I have been setting up the rafflecopter giveaway to run in conjunction with the blog tour
  • I have just set up a goodreads giveaway to start running the end of next week through most of October (more later)
  • I am working on getting links up on my website to buy the books from both Amazon, Barnes and Noble, and autographed copies from me
  • I am getting ready to set up pay pal for the website
  • I am constructing a very important blog post that I will be sharing soon – depending on my energy level it may get done tomorrow or not until Friday
  • I am trying to figure out what food/drink to serve at the book launch party
  • I need to clean up my office (or at least what you can see from the video webcam on my computer for tomorrow’s re-do of the Slushheap interview that didn’t get recorded
  • Today I got a crash course in doing a video book trailer (more on that later as well)
  • And I am still fighting the tail end of a sinus infection and dealing with a nasty cough that doesn’t seem to want to go away

My interview isn’t being recorded until the afternoon tomorrow so I hope to accomplish a few straggling things on my list tomorrow morning.  Because I am not sure if the interview will be able to be viewed live, I will post a link as soon as I have it here.

Okay, I am done here for the night.  Going to take my notes into the living room and right my last guest blog post while I wait patiently for the finale episode of Master Chef.  While I can’t eat a lot of what they are cooking, I do love watching people cook.

What I learned during National Invisible Chronic Illness Awareness Week

Sunday ends National Invisible Chronic Illness Awareness Week.  I first posted Monday on National Invisible Chronic Illness Awareness Week and included a link to the site  (http://invisibleillnessweek.com/submit-article/your-blogs-for-the-cause/).  I have read all the blogs posted (70) as of this writing.  What I have learned is that I am far from being the only person dealing with this outside my group of friends I have met since my journey began.  I have also learned that there are many “brave” men and women out there trying to carry on with their lives the best they can despite reactions, pain, chronic infections, chronic migraines, and the battle with depression either on its own or as a side effect of their other illnesses.  The stories were not much different from mine.  Some illnesses I was familiar with or had heard of but didn’t know much about.  Other illnesses I had never heard of before which sent me on a quick google search.

In honor of all those whose stories I have read over this past week and in honor of those whose stories are yet to be told, I say “GOD BLESS YOU” for hanging in there and for not giving up.

I am going to attempt to list all those illness that I read about here today.

Budd Chiari Syndrome  (I didn’t know about this ) – a blockage of the hepatic vein which carries blood away from the liver resulting in liver damage.

Chronic Fatigue Syndrome  see ME

Chronic Pain (I think this speaks for itself) – chronic pain can be caused from anything from rheumatoid arthritis to injuries from an accident.

Cuada Equina Syndrome (CES)  (One of so many illness that I was unaware of) – this is a rare disorder that affects the bundle of nerves roots (cuada equina) at the lower (lumbar) end of the spinal cord. 

 Cystinosis (another illness I was unaware of) a rare genetic disorder that causes an accumulation of  cystine, an amino acid,  within cells.  This causes crystals to form and build up damaging cells.  The crystals can affect many systems in the body especially the kidneys and eyes.

Depression – this can be hard enough to deal with but could also be a direct result of any of these conditions.

Diabetes (something most people know about but it makes sense that it would be an invisible illness)

Dysautonomia or also referred to as POTS (I have heard this a lot among fellow EI and MCS sufferers) –This is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). The autonomic nervous system controls  heart rate, blood pressure, digestive tract, and sweating among others.   Some with dysautonomia are affected mildly while others can be left bed-ridden.

Ehler’s Danlos Syndrome  (I had never heard of this before) – A group of disorders marked by loose joints and hyperelastic skin that bruises easily.

Endometriosis  (I learned I had Stage IV while a hysterectomy was performed due to extreme hemorrhagic ovarian cysts and the possibility of ovarian cancer) cells in the lining of the uterus grow outside the womb and attach themselves to other organs causing pain, sometimes debilitating pain.

Environmental Illness/Chemical Sensitivity (This describes me) a controversial condition where slight exposures to a chemical or group of chemicals can cause a wide array of symptoms from severe headache and brain fog to neurological reactions and respiratory symptoms.

Fibromyalgia (I have this but not nearly as severe as others I know) a common syndrome in which a person has long-term body pain and tenderness in the joints, muscles, tendons and other soft tissues.  It has also been linked to fatigue, sleep problems, headaches, depression and anxiety.

Food Allergies (I have this as well) An allergy to many foods.  Reactions can vary from rashes and hives to anaphylaxis. 

Glycogen Storage Disease or GSD (something I was not aware of)  – An absence or deficiency of on of the enzymes responsible for making or breaking down glycogen in the body. Depending on the type of GSD a person has, their enzyme deficiency may be important in all parts of the body, or only in some parts of the body, like the liver or muscle.

Graves Disease – a thyroid disorder that leads to the overactivity of the thyroid gland.

Lupus   Systemic lupus erythematosus (SLE) an autoimmune disease which means the body’s immune system mistakenly attacks healthy tissue which leads to chronic long-term inflammation.

Lyme Disease (this is something that is finally making more headlines) – caused most predominantly by the deer tick.  Left untreated, later symptoms may involve the joints, heart, and central nervous system.

Migraine – a chronic disorder characterized by recurrent moderate to severe headaches.  Symptoms include nausea, vomiting, photophobia and phonophobia.

Myalgic Encephalomyelitis (I have heard this in terms of Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome) – is used to designate a significantly debilitating medical order or group of disorders defined by persistent fatigue.

Mycotoxicosis (another diagnosis of mine) refers to the poisoning from exposure to mycotoxins.  The symptoms depend on the type of mycotoxin, the concentration, and the length of exposure.  Age, sex, and health also are determining factors in symptoms.  Mycotoxins can potentially cause acute and chronic health effects from ingestion, skin contact, and inhalation.  Some of the health effects found in animals and humans include death, identifiable diseases or health problems, weakened immune systems, allergens, or irritants.

NASH or Nonalcholic steatohepatitis (I had never heard of this disease before) – is a common often “silent” liver disease.  It resembles alcoholic liver disease but occurs in those who drink little or no alcohol.  The main feature is fat in the liver along with inflammation and damage.

Parasitic Infections – Many different parasites (including that which causes Lyme) can cause devastating effects on the body.  Some I have read about during National Invisible Chronic Illness Awareness Week are Babesiosis, Bartonella and Ehrlichiosis.

POTS  Postural orthostatic tachycardia syndrome  is a condition of  dysautonomia (see above).   A change from  lying to standing upright causes an abnormally large increase in heart rate.

PVC or premature ventricular contraction (another invisible illness I had never heard of) may be perceived as a skipped beat or felt as palpitations in the chest.  They are extra abnormal heart beats that begin in the heart’s lower chambers or ventricles causing insufficient circulation.

Rheumatoid Arthritis –  a long-term disease that leads to inflammation of the joints and surrounding tissues.  It can also affect other organs.

Sarcoidosis (A friend once told me she had been diagnosed with this) – Sarcoidosis is a disease in which inflammation occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues. The cause of the disease is unknown. Sarcoidosis can affect almost any organ of the body, but it most commonly affects the lungs.

Sjogren’s (again this was something I had heard about bud didn’t know anything about) a chronic autoimmune disease in which white blood cells attack their moisture-producing glands.  Most known symptoms are dry eyes and mouth but may also affect other organs such kidneys, blood vessels, lungs, liver, pancreas and the central nervous system.  Another piece of information that I wasn’t aware of is that is one of the most prevalent autoimmune disorders and 9 out of 10 patients are women.

Wegner’s Granulomatosis  – a rare disorder in which blood vessels become inflamed, making it hard for blood to flow.  It mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys.  It is thought to be an autoimmune disorder.

National Invisible Chronic Illness Awareness Week

Today is the start of National Invisible Chronic Illness  Awareness Week which runs through September 16th.

How many of you who are ill with environmental illness, chronic fatigue, fibromyalgia, etc. have been told that you don’t look sick?  I have been told that I look good when I feel horrible.  On one hand I am glad that I am not looking as horrible as I may feel but it is hard to explain to others when you may not look as bad as you feel. On August 3, 2012, I posted on this site “Me in the Beginning” When you look at my picture taken in 2002, it is easy to see how sick I was.  I don’t even think I realized how sick I looked until later when I saw my picture.  I knew I felt bad and something horrible was wrong but looking at myself in the mirror daily the changes were gradual.  I didn’t suddenly wake up with dark circles, a haunting look, skinnier than I had ever been and with yellowing skin tone.

I want to raise awareness that environmental illness, chronic fatigue, fibromyalgia and other chronic illness may not necessarily affect a person’s appearance. It is truly and invisible and silent terror that many go through on a daily basis.  I hope that a day will come when someone says they have some unusual or unexplained illness, they will be treated with respect and their complaints taken seriously.

I am posting two links for you as well.  The first is a link from an article written by Toni Bernhard.  Tony wrote an amazing book, “How to Be Sick” (A link to Toni’s website can be found on the side of my blog).  The second link will take you to the Invisible Illness site.

http://www.psychologytoday.com/blog/turning-straw-gold/201109/the-challenges-living-invisible-pain-or-illness

http://invisibleillnessweek.com/