Sarcoid Lizzie

What are the chances?

2012-02-06T14:42:00.000-07:00

First of all, I have been a slacker! I have totally neglected this blog for months! I have been dealing with a nasty flare, but I digress...

I had the greatest experience the other day! I was checking out at a local thrift store when I noticed two women talking. I had noticed one woman earlier because she was using one of those "fancy" small-sized oxygen concentrators instead of a tank. As the woman with the tank checked out, the cashier asked her about the tank she was using and stated that she needed to get one. Being the ultimate snoop, I listened in and much to my surprise I overheard the word "sarcoidosis" mentioned! I thought I was probably hearing things (as I have only met one other person with sarcoid)! In response, I heard the other cashier say, "Your kidding, I have sarcoidosis too." I could hardly believe my ears?!? Being the organizer of the new Utah Sarcoid Support Group, I jumped into action (okay, I don't jump anymore, but I hobbled quickly)!! I introduced myself and we exchanged e-mail addresses and phone numbers, but since it was busy in the store, that was all we had time for!

As most people with sarcoid, or with any other disease or illness, we were all excited to know that we were not alone. There are others in our community, maybe even in our neighborhood, that share some of the same challenges we face everyday!

I have since communicated with these fine women and they are now members of the Utah Sarcoid Support Group. We have a Google Group (message board) where we are able to share, comfort, inform and just be a friend to others with this challenging illness. I would be remis if I did not invite any Utah residents with sarcoid or their family members to join the group! We are always glad to have new members!

I look forward to getting to know all of the members of the Utah Sarcoid Support Group better! We hope to have our first actual face-to-face meeting soon!

I would have told you it would never happen -- there is no way I would run into one, let alone two, other people with sarcoidosis at the Deseret Industries Thrift Store in my hometown!!? I prefer to think that there was more involved than chance in this meeting. Whatever the case, I feel very grateful and blessed to have been there.

Just keep getting out of bed!

2011-05-18T18:01:00.000-06:00

I find the best way to start my day is to get out of bed! Usually I feel like "death warmed over," but once I'm up, get dressed, and drive to the corner to get my Coke Zero, I feel partially human. Then comes breakfast and my many, many medications.

Even though I hate the idea of taking medication (some that have serious side effects), they are keeping me relatively functional, keeping the pain to a minimum (sometimes), and making my life better. I am so grateful for great health insurance that keeps me "drugged up" and pays my many doctor bills. I don't know what my life would be like without it. I have been so blessed.

So, I guess this blog entry is what comes after a couple of bad weeks (because of flareups of sarcoidosis) of increased pain and with resultant lower level of function.

I am grateful to be through with the flareup for the most part and that I can "keep getting out of bed" each day!

I love the therapy pool!

2011-04-07T14:45:00.000-06:00

I just got home from doing pool therapy in a nice heated pool -- 96 degrees -- like being in a warm bathtub.

I haven't had the best week so far in terms of pain, in fact it has been horrible, but as soon as I got in that pool and warmed up my joints, I felt the best I had all week! I felt light as a feather, free of pain and eager to do my pool exercises and get stronger! I have sarcoid in my joints, especially my feet right now, and walking is extremely difficult for me, so to relieve that pressure and feel like I am doing something active and beneficial was wonderful!

Thanks so much to my therapist Tina and her aide Mandy for offering this wonderful program!

More about Sarcoidosis - What are granulomas?

2011-04-06T21:46:00.006-06:00

Hi Everybody,

Lizzie asked me to write a little bit about granulomas and sarcoidosis.

A patient handout found on healthcommunities.com gives a slightly different explanation of sarcoidosis (see below for a link):

"Sarcoidosis is a disease caused by an abnormal immune system reaction. In patients who have sarcoidosis, clumps of immune cells called granulomas form in the organs."

What are Granulomas?

Short Version:

Granulomas are formed by our immune system in an attempt to protect our body from foreign invaders. Cells which first form the center of the granuloma engulf or swallow the foreign substance, and other immune cells and fibrous cells surround the center cells to wall the foreign substance off from the rest of the body.

Long Version:

Granulomas can be formed by our immune system when there is inflammation lasting longer than two weeks (chronic inflammation).

During the acute stage of inflammation (the first two weeks) immune cells called macrophages and neutrophils attempt to destroy the foreign invaders.
If the inflammation becomes chronic and the immune system cannot protect our body from tissue damage macrophages morph into cells called epithelioid cells or join with other macrophages to form giant cells. These two types of cells cannot destroy foreign substances like macrophages can, but they can swallow or engulf them. The epithelioid cells and giant cells make up the center of the granuloma.
The center is then surrounded by lymphocytes (white blood cells) and can be covered by fibrous collagen creating a more stable structure, and then possibly calcified with calcium carbonate and calcium phosphate.

End of long version.

There is an excellent article on Sarcoidosis on "http://www.pulmonologychannel.com/sarcoidosis/index.shtml" as well as a printable "Questions to ask your doctor about sarcoidosis" if you want more information.

The rest of this information was found in McCance and Huether's Pathophysiology, the Biologic Basis for Disease in Adults and Children, Fifth Edition.

Jeanne

What is Sarcoidosis?

2011-04-04T18:35:00.001-06:00

My name is Liz and I live in Utah. I have sarcoidosis. I am just starting to gather members for a Sarcoidosis Support Group in Utah. Using this blog as a tool, I am going to share my own thoughts about sarcoidosis and what helps me find normalcy when my body is anything but.

Most people don't realize we are sick, unless maybe we are using oxygen or walking with a cane. When people ask you "why" or "what do you have" and you say "sarcoidosis," they usually ask you to repeat yourself. When you do and are asked for an explanation, things can get difficult.

What do you say?

This is the National Institute of Health's ( NIH) definition:

Sarcoidosis (say 'sar-coy-doe-sis') is a disease that can affect any organ or system in the body. People with sarcoidosis develop granulomas (small abnormal clumps of tissue) in certain parts of their body. If you have this disease, you may have no symptoms at all, or you may have serious problems with many different parts of the body. The exact cause of sarcoidosis is unknown.

Sarcoidosis is most common in adults between 20 and 40 years of age. It's more common in women than in men. Worldwide, it occurs more often in African Americans and northern Europeans, especially people from Scandinavia. Sarcoidosis is not contagious. This means you can't catch sarcoidosis from another person who has the disease."