Life with Chronic Illness

As I sit in bed tonight, wishing I could really sleep for the first time in over a week, I was flipping through my newly opened issue of allure magazine.  I try to save these silly magazines for moments like this - in waiting rooms, when you can't focus on a book, or before bed, where anything too exciting will just make me wide awake again.  A short article caught my eye - "How to Help a Sick Friend", an interview of Letty Cottin Pogrebin, the author of "How to Be a Friend to a Friend Who's Sick".  The article was fine, short and sweet, and did contain some helpful, but pretty obvious tips, like listen carefully, and stop by, but I am hoping for the book to be a little more substantial and helpful for people wondering what to do in a tough situation.

Through the years, as I have struggled through tough diseases, surgeries, and now a lifetime of surgeries and tumors ahead of me, I have seen friends walk away, not know how to act, and I lie on a daily basis …

Over the last few years, through all of my heath struggles, my mom and grandmother have been there for me more than anyone else.  My mom has been to almost every doctors appointment, and spends days at the ER with me.  She is the one to I usually go to when I need to cry (which it often), or share happy news (which is rare these days).  I don't know what I would do without her!

Happy Mother's Day, Mom!

Have you ever seen that YouTube video where the kid just had dental work, and is asking, "is this real life?"  That's what I'm asking myself right now.  I am considering getting a second opinion on all of this new stuff.  New tumors usually mean surgery, but I'm having to jump through hoops with specialists to get everyones opinion before we can do anything.  I also feel like I'm doing all the work here.  I am gathering all the information that I need to go into appointments educated, so I don't have to rely on someone to remember to explain what is happening, I'm scheduling appointments and calling back 10 times to make sure they are on top of a referral or letter.  I also keep track of which parent can come to which appointments, based on work schedules and general availability.  (That part is OK, the rest is not.)

I've gotten to a point where I don't fully trust anyone with my care.  So I put myself into the position of educator, patient a…

When you are a baby, everything is measured in terms of milestones.  First word, rolling over, crawling, walking, talking.  When you are an adult, going to college, getting a job, getting married, and having babies are all common and important milestones. Will I ever get to do some of these things?

Tonight, I saw some family that I hadn't seen in a while.  We were all sitting around at my grandmother's house and the conversation shifted from silly jokes to talking about weddings, graduations, and new love.  When these "milestone" topics come up, I find myself partially wanting to hear all the details, because these are all people I care about and love, but part of me just can't bear to hear it.  It's just too hard to think about all of these things that I have not yet done, and may never be able to do.

As the years have gone by while I have been dealing with Cushing's, Cushing's and more Cushing's, more of my family and friends around my age have …