imageHave you ever felt trapped? 

I have once or twice or a gazillion times.  Disease is trapping.  It feels like a loss of control because there are so many factors in your life that you simply can’t control.  Do we cling to the things we can? 

In conversations with my friends online this afternoon the theme has been trapped. Me, my friends, we are trapped. 

A friend on disability who so badly wants to work again but is in the hospital too often.  She wants her life back. She DESERVES her life back. Disability that is a blow to her pride after working a great job for 10 years.  Me and this friend we talk, and we both share the same trapping feelings.  I too applied for disability in the past but never followed through because of my pride, and so instead I just sat here for years hoping to get better and not receiving assistance.  Stupid.  Every now and then I would get back to work but never working enough hours to make much of a difference and soon I would be sick again.  Trapped.  Both of us both needing of it, deserving of it, but not wanting it.  Both wanting so badly to work because we just want to go back to our normal lives.  I am working now…  Both feeling like if we did get disability then we would have to stay on it because if we did go back to work then we would lose our disability and our health has been so unstable that of course once we got back to work we would get sick again and then be without the disability we just had.  Trapped.  

A friend who lost her house and her job and all that she worked for and at my age is back with her parents.  All she wants is medication. She needs it and she deserves it.  But she gets denied. Trapped.  What is she to do now? How much more does she have to lose? How is she to afford medications that cost thousands   of dollars? She feels trapped. 

A friend who just got laid off from work after 3 months of fighting with HR to get her FMLA papers.  They said it wasn’t because of her health but…  Trapped.

I have felt trapped so often it’s crazy. And now what I do is I ignore it. I ignore so much and pretend it doesn’t exist because it’s easier that way.  I’ve been doing this for years, it’s my coping mechanism. Yes, I know it’s not healthy. I scare myself sometimes with how emotionless I can be. But years of trauma hardens you in ways. I’m working on it, promise. 

Me? I need to file bankrupt. I have millions in medical debt from the first time I didn’t have health insurance and went through medications, doctors appts, and six months in the hospital with 2 surgeries.  My debt keeps me from being able to have bank accounts, credit cards, or anything really. But my pride gets in the way and I get paralyzed and can’t apply.  I don’t know why, I have no good explanation, but I can’t.  I kept telling myself that I would apply when I knew that I wouldn’t rack up anymore medical debt. And here I am now just having lost my health insurance again and sure to acquire more debt. Trapped.  

My remicade infusions cost $10,000 and now I have no insurance.  I am supposed to get them every 7 weeks but with the loss of insurance had to wait 13 weeks to get assistance for that last infusion I had.  I got sick. 

I am trapped. Trapped trapped trapped.  I need to see a doctor now because the 13 weeks without my medication bumped me out of remission but I can’t see my doctor because I have no insurance. Trapped.  I am scared the longer I remain uninsured the sicker I will become, and then I have to stop working again.  That is the last thing I want.  Trapped.  

If I stop working again I lose everything I have been working so hard for in the past few months.  Trapped.  

Why isn’t it easy? Why can’t it be easier? 

I trap myself too.  Not on purpose, but I know that I do.  I have thoughts that trap me from reaching my fullest potential.  I tell myself that I don’t deserve nice things or nice people in my life because I have nothing to offer. Who wants a girl with no health insurance, bad credit, and a disease? I know I am being silly and I know that I am beautiful, smart, driven, and passionate but I can’t say that those thoughts don’t cross my mind.  

I feel scared a lot. Trapped a lot.  I want nothing more than to work hard and succeed.  I want that so bad.  I know that all of my friends want that because we hate being sick.  The last thing on earth we want is to be in the hospital or at home with little quality of life while we are forgotten about by friends and family who are healthy and out living their own lives.  Right now, today, I feel trapped.  

One foot in front of the other…

Tomorrow is a new day.