I am having one of those days where I just don't feel good. I can't tell you why-there is no one symptom I can give you. I just feel blah. I wish I could have spent the day in bed with my cats.
Of course, that is not an option. Some days I want to just lock myself in my house and not come out. I think of all the times I have been hospitalized and label them as 'vacation from real life.' What else can you call it? The last time I was hospitalized was March 2009. I had my 9th abdominal surgery to remove adhesions and scar tissue that were causing partial blockages. I usually have surgery every three years or so and March 2012 is three years. I am not having as many symptoms as I was then. Maybe I will make it past March!
I am not an optimist. I am a realist. People say to me "you shouldn't think that way." Well I do. It comes from almost 30 years of dealing with Crohn's disease. Optimism went out the door a long time ago.
I have spent my life hiding my true feelings from every one. So much so that now I am all alone in life. Of course, I still have my parents-but they live far away. I have isolated myself from friends and have no one to talk to about what's in my head.
That's one of the reasons I started this blog. So I would have a place to state my real feelings unedited and unscripted. I don't believe anyone will really be reading this-but if you are-I hope reading my thoughts helps you in dealing with your disease. Maybe your thoughts reflect mine and you won't feel so all alone.
It's so hard to have a life when you hook up to IVs at 5pm and go to bed then because the IVs run for 12 hours. How much fun can it be to go out dragging your IV backpack and tubing with you? Will there ever be another man in my life who will truly love me and be able to look passed my illness, ostomy and TPN dependence? I sure hope so. I don't want to spend the rest of my days alone.
If you are reading this and are isolating people like I have. STOP! Let people in-let them know how you are doing and feeling. Don't end up all alone like me.
Hey girl, I've finally caught up on your blog! I have been on nightly TPN for over 2 years now, and other times in the past have been on it for 24 hours daily - while I was out of the hospital. I didn't give a **** lol, I threw my bookbag on my shoulder & went out. When I felt good enough to go out, that is. Don't worry about running into anyone who may be ignorant, if they knew your story they'd reconsider their prejudices.
ReplyDeleteAnd another thing, the guy I am dating has been with me AFTER I started on TPN indefintely, so it can happen. I've been in your mindset, worrying if I'll ever find someone, dated guys that couldn't handle me being upfront about my numerous issues, but of course they were just not strong enough for me. But there are plenty of real men who are strong enough to deal with us - and I say that with conviction! It's learning to let someone else in that you can lean on that's still hard for me to do but I'm learning in my stubbornness ;) I know you say you're not an optimist, you're a realist and I am too. But whether you want to admit to it or not at the same time you ARE an optimist or else you would not have made it this far in life, period. What you need to do is recognize that part inside of you and use that strength to it's full potential! We've only chatted through the CDSN but I know it's there. Find it, use it & hold on tight because now it's really gonna get interesting! Keep up the good work on the blog and we'll talk soon!
:)cherie
@Cro Shay Shay-your comment means a lot to me. You made me tear up! I hope you are right and I don't end up alone. Thank you so much for being there for me.
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