An Open Letter to a Patient and Spouse
True Experiences From the Front Line of Patient Care
Dear Mom, Dad, Brother, Sister, Husband, Wife, Partners, Children, friends and family,
I would like to introduce myself. I am someone in your life who loves you and cares for you. I am sorry if you don't feel well a lot of the time. I am sorry you have to take painful shots in your backside to keep your pituitary tumor in check and a handful of pills every day. I am sorry you have a headache, joint pain, depression, eyesight issues and general malaise.
However I do want to tell you something. I love you. No, I don't exactly or specifically know what you are going through. I don't feel your joints ache, I can't visualize what you see with your diminished vision, and I don't have a headache 24/7. But I do see you try to make it through the day, plodding along, trying to put up a good front for me. Sometimes when you don't put up a good front I can see the pain in your face and see how tired you are from not feeling well day after day.
Years ago if anyone had ever said to me 'when you are older you are going to become very knowledgeable about pituitary tumors' I would have denied the possibility. How about diabetes? Got it, thanks. How about organ failure, MENS, Crones, blindness, transsphenoidal surgery, gamma knife? Got it, thanks.
Now, about me…. I go with you hand-in-hand, to as many doctor appointments and conferences as possible. I am happy to sit in the lobby with you waiting for the doctor to call you back to the room so he can say 'how's it going, any changes, thanks for the co-pay, see you in 6 months. I sit next to you when you have your MRI because you are claustrophobic and need my calming demeanor to help you through the pounding as the test progresses. I help with your shots, run to the pharmacy to pick up your meds, ask about your day and offer my love and support. Please understand and believe me when I say that I am not the enemy. However, since I am the one closest to you when your Growth Hormones get the better of you, I feel like I have to shoulder the blame when you say something you should have kept to yourself. If you feel crappy, I get it but please don't take it out on me.
I also know that there are some patients who do not have the type of support my Mom, Dad, Brother, Sister, Husband, Wife, Partner, Children, friend or family has, but there isn't much I can do about that, my hands are full. I have a job, children, a home, a car, friends and I need to keep everything on an even keel if possible, and I am trying my best to keep my sanity, same as you.
My goal here is to remind you that you are not alone. You have people who care, even if they don't completely understand. But please be nice. I know that sometimes it can be hard, but please make an effort not to blame the person who loves you and wants to help you. Your meds and your tumor make it hard for you to do this sometimes but the rest of us would love it if you would try.
Anyone's and Everyone's Loved One