Lessons from My Autoimmune Life

I’ve been living this autoimmune life for almost 4 years now.  My symptoms started in 2017, but diagnosis did not happen for me until September 2018.  The day that I was diagnosed with autoimmune disease changed everything in my life.  Literally everything.  Everything that I thought that I knew changed.  Every plan that I had changed.  Every goal that I was working toward died on that day.  My life as I knew it died that day.

When this journey started for me, I was a scared shell of a woman who had just been given the worst news of her life.  I didn’t know if I should fight for my life or plan my funeral.  I was originally given ten years to live before I would require a liver transplant.  I spent days and weeks researching and reading anything and everything that I could get my hands on.  Prior to my diagnosis, I didn’t even know what autoimmune disease was, let alone have any suspicion that I was autoimmune.  I wasn’t searching for a diagnosis when I got one.  I didn’t think that anything was wrong with me.  I was the healthiest I had ever been in my entire life.  I was in my prime.  My life was finally coming together when the Universe threw me that curve ball.

As soon as I learned that I was sick, my marriage started to struggle a bit.  Don’t get me wrong here, my marriage is great now.  I am married to the love of my life and the best support person that anyone could ever ask for.  However, during the first year or so after diagnosis, I went crazy.  I was angry, sad, scared, emotional, anxious, depressed and grieving.  I grieved for the loss of the life that I thought I would have.  I grieved the loss of the career that was finally taking off.  I grieved for the grandchildren that I might not ever meet.  And through all of this grief, my marriage went through some rough spots.  There were days that I thought we would never survive.  There were nights where I wondered why in the Hell my husband is staying by my side.  There were times where I fell even more in love with him.  The more he persevered, never giving up on me (even when I had given up on me), the more I fell for him.  Through the hard times our marriage actually became stronger and now we are much more bonded than ever before.  I don’t think that there is anything that could sever that bond now.

My autoimmune life has taken me a few years to adjust to.  In some ways I am still adjusting to it and I think that I will constantly have to adjust as my diseases progress and things change for me, and maybe that’s okay.  For now, my diseases are well-managed and the progression has been slowed.  I educate myself on my diseases as much as possible, and I follow all of the newest research and advances regarding my health conditions.  Most of my doctors are quite impressed with my knowledge and understanding of my diseases.  I learned a long time ago that when you have rare diseases, you must advocate for yourself more than the typical patient must.  Most of my doctors have never heard of my other diseases until they have me as a patient.  My primary care physician has taken the time to learn more about these diseases and I love her for that.

I have had to learn how to accept help from other people, which has been no easy task.  I’ve always been the one to do and take care of everything for my family.  Now that I’m sick there are so many things that I can no longer do.  I hate to ask anyone for help, and I’ve rarely allowed anyone to help me in the past but that has also changed.  I have to rely on other people for my survival now and that is very uncomfortable for me.  My life literally depends on it but I fight it.  I especially dislike my children taking care of me.  Not that I don’t love and appreciate them for it.  I know what a blessing it is to have help this day in age.  However, my children are still teenagers and should not be saddled down taking care of their sick mother.  This is one of the biggest arguments in my household lately!

Today, I am educated on my diseases.  I have adjusted to the major life changes and medication requirements for my conditions.  My support circle is growing every day.  I’ve got a plethora of fellow spoonies behind me, offering guidance and encouragement.  I am a member of several support groups and I even run some of them.  I have learned so many life lessons in such a short period of time, that it’s changed the person that I am, and I think it’s a change for the better.

Stay safe fellow autoimmune warriors and friends and family.  Love and light now and always!

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