Skip to main content

Missed Milestones

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 been in serious relationships, getting engaged, getting married, and even having babies.  I can't help but feel left behind.  I know I have blogged about this before, but now, with this new diagnosis of MEN-1 hanging over my head with countless appointments, possible surgery, and maybe even cancer, I feel like the only thing in front of me is dealing with another huge medical issue.  Most people at my age are starting careers, having serious relationships, buying houses, traveling, and even starting companies.  But I'm still doing the same thing I was doing 5 years ago - trying to get well.

"Well" seems further and further away each day.  Every time I feel like I can taste it, it jumps a few years away from me.  Will I ever be able to consider myself "well"?  Will "well" ever be the truthful answer to "How are you?"?

I wish I knew the answer.  I wish I knew how much time I had before the next big obstacle.  I wish I could be "well".

Comments

  1. I will pray for you. I know it's very hard. Being sick, you miss out on so much. It does sound like your family includes you so that is a good thing. I could have titled this "What Endocrine Disease and Disability Has Cost Me"

    http://fivehundredpoundpeeps.blogspot.com/2011/12/what-being-fat-has-cost-me.html

    ReplyDelete
  2. It is rough :( I think about this a lot and how different my early 20s would have been if I were able to be a "normal" college student... and its totally fine to yell and scream and cry and vent about it sometimes! Do it and get it out! But your time is not completely over. Dwelling on the past doesn't allow your mind to focus on the future. And in the present, you are beautiful you! - said a prayer for you to get past this new milestone in your life

    ReplyDelete

Post a Comment

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood. Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post. To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer. In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after re

10 days at MGH

It's been 10 days, and I am still in the hospital.  I walk two or three (very short) laps around this floor and my heart rate is upwards of 130, my lips, fingers, and toes are increasingly blue-tinged.  My oxygen saturation levels are even lower now, after sitting here for over a week.  So what have we accomplished so far?  Let me tell you. I had the arterial blood gas sampling done on Sunday.  It took a couple more tries but success!  It was of course, painful but nothing that I couldn't handle, especially if it meant an answer and an easy fix.  My arterial blood looked very dark as she was drawing it out, not the bright red oxygenated blood you usually see from arteries.  The doctor commented on this, and said that it was very interesting. Unfortunately, I did not have an abnormal level of methemoglobin.  So that ruled out methemoglobinemia .  The plan was to have an echocardiogram on Monday.  After waiting most of the day, I got pushed to the next day's schedule

MGH Round 2

Hi all, I've been pretty absent from blogging/life activities over the last month or two because my whole life seems to be consumed again by illness and complications from Adrenal Insufficiency.  Right now, I'm typing from my private room at Mass General, where I have been since Saturday.  Before that, I was at a local hospital for a few nights. After being discharged with no answers for my shortness of breath in January, and then refusing further treatment for Lupus related hemolytic anemia, I went back to work and tried to continue on as normal.  This worked for a while, but then enlarged lymph nodes started popping up all over my neck.  I was seen a few times at my PCP's office, and at first thought it might be the start of a virus, but when they didn't disappear after a few weeks, I had an ultrasound to see if we could find a cause.  It turns out, aside from multiple slightly enlarged lymph nodes, I had one whopper lymph node on the left side of my neck, which w