Living with Lupus and to the man I love

Posted July 29, 2018 by Dee Almeda

I have come into terms with the reality of the situation I am currently in. I hated my body, I was in denial, angry and questioned a lot of things. A lot of things are in my mind and I felt like I was alone in this battle.

Pituitary Macroadenoma

Endometriosis

AdenoMyoma

PCOS

They are just the least of concern but being diagnosed with Systemic Lupus is like a death sentence. Those I mentioned all hurt including two succeeding miscarriages just this year that was also caused by the Lupus itself and a positive Anti-SSA.

I am really broken, not just physically, but also psychologically and emotionally.

It’s not easy, there are current studies that if you have Lupus, your life span can only last for 10 years but if the medications went well, at least a normal lifespan. Few family members and some of my relatives whose friends has it, most of them are dead. The progression of the disease is fast, that’s why I am trying so hard to take medications and to live healthy and I am determined to fight because I picture myself being a Grand mama.

I am turning 36 in 5 months, there are days and nights that my joints and entire body are really painful because of the disease but I try and put up the face, wear make up, go to work, make jokes and act as if I am not in pain. There is one person who knew how I suffer, that’s my husband.

My Husband is a very stoic man and being an ISTJ personality type, he is not the one to show emotions to others. Whenever I am in pain and when I suffer from the symptoms, he tries to make a straight face. I know how to read body language and facial expressions. I can tell how hard he pulls himself together. When we love others and they are in pain, we feel so helpless, we wish we can take their pains away but we can only watch, pray and hope that their pains go away. In the past, I knew you would say that I am your liability, I felt so much hurt but I now know why you said that.

To the man I love and loves me back, Thank you so much for choosing me. I know there are times that you may or may not have regrets in marrying someone like me, riddled with diseases, a ticking time bomb who will pass ahead of you in this life time. We never know.

People who knew you will say you are emotionless, hard and stoic. I know better. It was just your front but deep inside, you are the most sensitive and caring man I’ve ever known. I know deep inside you are just as scared as me but we both prefer to pretend that life is good and we still move forward to our goals.

Whenever the symptoms from my disease flares up and shows its ugly head. Whenever I am in so much pain. I can see how hard you face would scowl and how tight you lips form in a growl because you don’t know what to do to help me ease the pain I feel. On these moments you would just lay down quietly beside me, always holding my right hand with your left and your right arm hugging my tummy while you stay vigil, watching me as I wince and breathe heavily until the medicines take effect and I fall asleep in your arms.

There are times that whenever those episodes happen, just like that night few days ago, I just want to reach out and touch your face and tell you how much I love you and how grateful I am that even if I am a liability in your life because you said that I am your weakness and you hate it when you feel vulnerable and weak, I am so fortunate that you are by my side in these moments when I feel so alone.

There are also times that I contemplate that when the time comes for me to leave this world, I hope you can marry again so that you will never feel alone. You’ve been a loner all your life. You’ve loved in the past but they left, then you found me and took me home. I want you to be happy be it life with me or without me.

I know we still have a lot to sacrifice, there are times we have our laughter, times we have fights (all marriages has) but we do compromise. I don’t know if we can still have a child but if it’ll put my life at risk, then let’s just make lots of good memories so that when I finally close my eyes, all I will carry to the next life the memories we shared together.

I love you.