Forever Changed: Random Reflections

100.  That’s how many posts I’ve written on here.  100!  Y’all don’t know me well enough to know how huge that is.  I almost never stick to anything that I start.  When I first started this blog, I never would have imagined how therapeutic it would prove to be.  I just wanted somewhere to write my updates for my family and somewhere to put my random thoughts.  You see, when you have chronic illness like I do, you quickly find that not many people actually want to hear about your health issues all of the time.  Even family has sometimes heard enough about it.  It gets a little lonely and scary at times, but this struggle has built me into who I am today.

Chronic illness has forever changed my life.  It’s one of those things that you just don’t understand until you are living with it or love someone who is living with it.  Prior to my diagnoses, I had no idea that life was so horrible with chronic conditions and I’m sure many of you really have no idea, too.  Count yourself lucky if this is you.  Unfortunately, my illnesses have taken so much from me that I barely even recognize myself anymore.  I’m a shell of the woman that I used to be.  I’m losing weight like crazy and can’t get it to stop coming off of me.  Most days I’m so weak I can’t lift a gallon of milk.  I have to rely on my husband for far more help than I should ever need.  I don’t even consider myself to be a functioning member of society right now.  All of these take a toll on my mental health in addition to my physical health.

The changes in my autoimmune life are not all negative or unwanted.  This health journey, as unwanted as it is, has changed me forever.  For the rest of my life I have one goal:  to stay alive.  This is not an easy goal to attain when my immune system is trying to kill me every single day of my life.  When I was first diagnosed, I was given ten years to live due to PBC, the disease that is attacking my liver.  I spent the first two years in the worst depression of my life.  I thought I would never make it out of that dark place.  Little by little, I came back around and found hope in the smallest of things.  Recently, a lot of my labs and scans are showing that we have caught both of my diseases very early and the prognosis is so great that I’m ready to try to go back to work on a part-time basis!  After two years of bad news and sorrow, I feel like a have a new lease on life.  I’m ready to get back to the business of living my life, rather than just surviving as I have been.

The biggest benefit in my autoimmune life has been in my marriage.  This is backwards from what you would expect.  Statistically speaking, marriages often fall apart due to chronic illness of one spouse, but mine has strengthened to levels I did not know existed.  I always have this fear in the back of my mind that Michael is going to leave me because I need too much from him.  This is an absolute irrational fear.  My husband is the type of man that will not walk away – no matter what!  He’s loyal to a fault and that’s probably my favorite thing about him.  I know that I would not be able to survive my autoimmune life without him by my side.

My kids have also had to pay a price due to my autoimmune life.  You see, when you’re immune-compromised you have to be very careful of any  germ that can enter your home or body.  My kids have not been able to go to school for over a year now.  The fear of them bringing home Coronavirus was just too big of a risk.  They have had to miss out on social interaction, friends, sports and the ability to have lives of their own.  They are teenagers.  They are not supposed to be taking care of their mom and hiding away from the virus.  Even though I know that they have missed out on some things, they never let me know if it bothers them.  Next week I will be fully vaccinated and they will return to in-person learning the following week.  They are very excited and I am, too.  It’s given me a lot of guilt living with the fact that they are missing out on so much all because of me and my bad health.  It just doesn’t seem quite fair, does it?

I have learned that taking care of myself is more important now than it has ever been.  The most daunting of my diseases is most certainly the PBC.  This disease threatens to put me on the liver transplant list and I’ve never even had a drinking problem!  At any time this disease can take a sharp turn for the worse.  They say the younger you are at diagnosis, the worse it will be and I was very young to be diagnosed with PBC.  That part scares me, but I have learned to focus on the positive.  As far as the liver disease is concerned, I am doing amazing.  I have absolutely no liver fibrosis and no signs of cirrhosis (that usually doesn’t come until stage 4 and I am stage 1-2), my symptoms are well-managed right now and I am one of the lucky few that respond very well to the medication.  I’m reading a new book about PBC and from what I’m reading I have a great prognosis because we have caught it so early.  Everywhere I look lately, I’m getting good news.  I’m afraid to enjoy it for fear that it will quickly be taken away again.  I just can’t deal with any disappointment after everything that I have already been through with my health.

I’m not who I was when this adventure through the land of the autoimmune began, and that’s probably a good thing.  Today, I am armed with knowledge and a team of medical specialists – 15 of them to be exact!  I have a support system in place with at least three people I can call if I need to.  I am no longer the scared little girl that I felt like at the time of diagnosis.  I speak up.  I ask questions.  I try to advocate for myself, but oftentimes Michael has to be my voice.  Each and every day I struggle, but I persevere.  That’s what this autoimmune life has taught me.  Never give up.  And as long as I have anything to do with it, I will continue to persevere and I will never give up.

Stay strong autoimmune warriors and friends and family!  Love and light now and always!

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