Monday, July 20, 2015

Maybe it's not all in my head

**I'm so excited to announce that I've started a youtube channel discussing everything home making. My channel name is Surviving As Mom.  Check it out!!

I'm not writing this to get sympathy from anyone.  Everyone who knows me know that is NOT how I work.  I actually almost never talk about what is wrong with me.  I don't like to complain about how awful I feel or how much pain I'm in.  It's just not my style.  That being said, I decided to write this to share my story with anyone who may also be experiencing these problems.  I'm sharing this to help support and guide others who may be going through something similar.

I have an autoimmune disease.  I have a few actually.  At this point in time, my diagnoses are Hashimoto's Thyroiditis, Sjogren's syndrome, Raynaud's Disease and erythromelalgia.

What initiated the need for testing for these illnesses was my constant severe fatigue, body aches, joint pain and stiffness.  These feelings were almost continuous for about a year.  I just didn't feel right and after doing my own research, I decided to visit a rheumatologist for testing.  I already knew about the Raynaud's and erythromelalgia, but not the Hashimoto's and Sjogren's.

If you look up the names, they consist of the following (briefly):

Hashimoto's- the immune system attacks the thyroid gland, causing an overactive or under active thyroid, which leads to a whole other list of problems.  In about half of the cases, the thyroid is unaffected, which is the case for me.  However, I do have to keep an eye on my thyroid function in case that changes.

Sjogren's- the immune system attacks all moisture producing glands creating a whole host of problems.  This is where most of my discomfort comes from.  It causes dry eyes, dry mouth (with sores), dry nose (with cracks and sores), dry skin, digestive problems, breathing problems, joint pain and stiffness, muscle aches, and severe exhaustion and fatigue.  There are other body systems that are affected, but these what affect me.

Raynaud's- Extreme sensitivity to cold temps resulting in blue or yellow hands, feet, ears and nose.  It is extremely painful and very dangerous due to the risk of frostbite.

Erythromelalgia- An extremely painful vascular disorder affecting extremities, face, nose, ears.  More commonly affecting the legs and feet.  Also called "man on fire" syndrome because that's what it feels like!  Affected areas also swell up and turn bright red.  Usually triggered by heat, stress and activity.
*I diagnosed myself and confirmed diagnosis with a doctor after years of not knowing what was wrong with me.  For many years I didn't even know it was abnormal to have these feelings.

Of course I'm not happy to have these issues, but I am so relieved to have an actual diagnosis, proving that what I've been feeling is real.  For years I've struggled with all of these illnesses and even after seeing many doctors and having multiple tests, I still didn't have a diagnosis.  I was so frustrated and had given up altogether until about 3 years ago.  Looking back on all of my issues, they all make sense now that I have names for my conditions.  Now at least, I know what to expect and how to manage it.  More than anything, I know it's not all in my head, as many doctors implied.