Monday, April 2, 2012

Sarcoidosis Awareness Month


By Mayo Clinic staff In about two-thirds of people with sarcoidosis, the condition resolves with no lasting consequences. But in some people, sarcoidosis can become chronic and lead to complications that may affect different parts of your body, such as your:
  • Lungs. Untreated pulmonary sarcoidosis can lead to irreversible damage to the tissue between the air sacs in your lungs, making it difficult to breathe.
  • Eyes. Inflammation can affect almost any part of your eye and can eventually cause blindness. Sarcoidosis can also cause cataracts and glaucoma. However, this is rare.
  • Kidneys. Sarcoidosis can affect how your body handles calcium and this can result in kidney failure.
  • Heart. Granulomas within your heart can interfere with the electrical signals that drive your heartbeat, which can cause abnormal heart rhythms and even death. This occurs very rarely.
  • Nervous system. A small percentage of people with sarcoidosis develop problems related to the central nervous system when granulomas form in the brain and spinal cord. Inflammation in the facial nerves can cause facial paralysis.
  • Reproductive system. In men, sarcoidosis can affect the testes and possibly cause infertility. Women with sarcoidosis may find it more difficult to conceive, and their signs and symptoms may worsen after delivery.

Friday, March 30, 2012

My ABC Illness

I guess I have way too much time on my hands since I spend a lot of my time at home taking a bagful of meds everyday to try to combat all of the many issues going on in my body. Doctors are somewhat baffled. Is Sarcoidosis to blame for all of these symptoms or is there something else going on concurrently? This question has been raised over and over for the past year without any concrete answers and without any real treatment plan that works! My doctor is frustrated as much as I am. it ABC's of my illness:

A: Anxiety, Arrhythmia
B: Bone Pain 
C: Cataracts, Chills, Chronic Pain
D: Dry Eyes, Dry Mouth, Depression
E: Enzymes Up And Down (Liver)
F: Fatigue, Fibromyalgia
H: Hair Loss, Hives,( Rashes)
I: Insomnia
J: Joint Pain
K: "King-size" Ankles
L: Lung and Lymph Node Sarcoidosis
M: Migraines, Muscle Cramps
N: Night sweats, Nausea
O: Ongoing Bowel Issues
P: Peripheral Neuropathy
Q: Queen of Daily Headaches
R: Raynaud's Syndrome
S: Scoliosis
T: Twitching Muscles
U: Ulnar Nerve Damage
V: Visual Disturbances
W: Weak Muscles
X:  X-Ray Abnormalities (Pet Scan...lots of lymph nodes lit up)
Y: Yearning To Have One Pain Free Day
Z: Zero Tolerance For Bright Lights

Saturday, March 3, 2012

An Upside To Everything

When I was first diagnosed with Sarcoidosis I had never even heard of this disease! Since then I have researched day after day to find out as much as possible about it and about treatment options. I also have met some wonderful people who have become like a second family to me. They are my Sarc family. They also suffer from Sarcoidosis and most are alone in their community as I am. The latest thing I am dealing with is hair loss. I have to admit...I am not thrilled about this! No one told me that Sarc could do this and none of my medications listed hair loss as a side effect! After doing some research on my own, I discovered that not only can Sarcoidosis cause hair loss in some people, but at least four of my medications also cause hair loss. I have to say that when my hair began falling out I was a bit upset and shocked to see a clump of my hair loosely falling from my scalp! Day after day more and more hair continues to fall. I have now purchased a wig. This is definitely something I never thought I would do! Anyway, I was thinking this morning that there is always an upside to everything! There really is... you see, I won't have to mess around with my curling iron for an hour every day anymore. I get so tired of plucking my eyebrows! That will no longer be a morning ritual as I lose those. I suppose I won't have to worry about unwanted facial hair either and that is really an upside! This wig thing could really become quite fun actually. I could have  bunch of different ones...different styles, different colors...why a new me any time I please! No more being down in the dumps over hair loss for me! I choose to look on the upside of this.

Monday, February 27, 2012

Rare Disease Awareness Day

In two more days...February 29th,2012, people all over the world who have a rare disease will be acknowledging this day as Rare Disease Awareness Day. There are events scheduled all over the globe to bring the public into a better understanding of these rare diseases. One of these diseases that actually does make the "rare disease" list is the one which I have.....Sarcoidosis. I have read a lot of literature about this disease since being diagnosed and I can tell you firsthand that much of it is either outdated or just not accurate. I also, since being diagnosed have joined up with other people worldwide who also have this disease. We have many symptoms in common that affect our entire body, yet the medical profession is still looking at this disease as a "lung" disease  and instantly gives every Sarcoidosis patient a Pulmonologist and a bagful of Prednisone. Perhaps that works for the mild cases, however I know firsthand that just because the lung symptoms improve doesn't mean you are better. Sarcoidosis affects the immune system and the entire body. I know from talking with others online that I am not alone in my pain ...besides the lung symptoms, this is what Sarcoidosis is REALLY like.....Chronic fatigue, joint pain, bone pain, daily headaches,tingling and numbness in hands and feet,strange skin rashes, muscle cramps, blurred vision, burning and itchy eyes, cataracts, hair loss, chronic cough, chest pains, kidney problems, heart problems, liver problems...and it goes on and on. I think it is time for the medical profession to wake up and realize this is a multi system disease! Stop treating it as if it only affects one part of the body when it affects the entire system! There needs to be so much more research as to which medication actually works to help the immune system and slow down the progression of the granulomas which this disease produces in the lymph nodes and organs. Sarcoidosis patients like any other patient with a chronic illness, get discouraged and lose hope because their doctors just don't know what to do to help them. If you know someone that has Sarcoidosis ...offer support at least emotionally so they don't feel as if they are fighting this alone.

Thursday, February 2, 2012

The Sarc Saga Survives

This saga of Sarcoidosis just keeps on and on. It is a tough cookie and just keeps surviving no matter what... it rears its ugly head in numerous ways to try and show who is boss. What this monster of a disease hasn't quite figured out yet ... is that this chick that it decided to mess with is a stubborn fighter! All of the many trials and problems I have been through in my lifetime have prepared me for this new battle! The Prednisone that I have been on for the last six months has really not made any difference in my symptoms for the better. Instead I have been having more issues than ever before while taking it. My headaches are now a daily occurrence, bone and joint pain are constant, extreme fatigue, insomnia, and on and on the list goes. The latest discovery,  is that I have developed cataracts in both of my eyes. This has come fairly quickly since I had an eye exam last March and there was no signs of anything wrong other than my nearsightedness. I suspect that the Prednisone has caused this not so welcomed side effect. This next week I will be going to see a new specialist at a University medical center. I am hoping for some answers and hope they can come up with a treatment that will actually do more good than harm.