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!! http://www.youtube.com/channel/UCmrj6ilyMI5G2hnraXRWpEQ


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.

If Only I Had as Much Energy as my Kids...

**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!! http://www.youtube.com/channel/UCmrj6ilyMI5G2hnraXRWpEQ

I just don't get it.  How is it that my children can wake up at 7:30 am, have a very active day, including two long car trips (about 2 hours each way) and still be bouncing off the walls an hour after their bedtime?!

We went today for a family BBQ in Staten Island and spent over 7 hours there.  The older boys swam in the pool for the majority of the time while the baby just bounced around from person to person with a little pool time in between.  There must have been 25 kids there, from toddlers all the way up to teenagers.  There were also plenty of fun adult cousins, aunts and uncles to play with.  The amount of jumping, swimming, running and laughing was enough to make any kid pass out the second their butt hit the inside of a car.  Not my children!  All three of them stayed awake the entire ride home and just bugged my husband and I who were exhausted and ready for bed.  They asked question after question and managed to fight each other the whole way.

When we finally got home, hubby and I were struggling to stay awake.  We were hungry and tired, but we still had to get the boys in the house, changed and in bed.  However, this was not going to be so simple tonight.  Somehow, they were endless balls of energy, bouncing off the walls.  They were jumping on my poor hubby who was laying on the floor, trying to wrestle with him.  They sensed our weakness and took full advantage.  After about an hour, hubby finally got up to get everyone moving in the upstairs direction.  Even on they way up the six steps to their bedroom, they were still jumping, bouncing, yelling, and just trying to instigate a wrestling match with daddy.  At 9:30, an hour and a half after bedtime, they were finally in bed.  It took another 10 minutes for them to stop talking and finally fall asleep.

We weren't out of the woods yet.  The baby still has not fallen asleep.  It is currently 10 pm and he is still running around the living room causing havoc.  I've already tied three times to put him to bed, but he is must not having it.  Sadly, he doesn't look any closer to going to bed than he did an hour ago.  All this while I am sitting here, falling asleep on myself.  I just don't get it!!

I only wish I had that much energy!  Oh, the things I could accomplish!  Daily life would not be such a struggle if I had endless energy like my children.  The house would always be clean, the laundry would always be clean and folded away, dinner would always be amazing, and I might even be able to work part-time at night.  But alas, I am just a tired, beat up mother who is too tired to eat at times.  Oh well.  I guess that's the sad truth of being an adult.  Too much to do, and too little energy to do it.