Well, I Used to Like Onion Soup…

One of the big things I have had to deal with since my bilateral lung transplant a little over a year ago is dealing with my new transplant body.  There are so many new and different things going on in there, it’s often hard to keep track of it all.  Some are awesome (lungs breathing air, for example). Some are not so awesome (almost an infinite supply of random pains I never knew I could ever even  have).

Anyone that knows me knows that I like to over plan and over analyze, and that I don’t react well to changes. Needless to say, finding out that your whole body system has literally changed overnight can be quite jarring.
So, I decided I needed a plan. I was going to figure things out. I was going to sort out all of my new idiosyncrasies until I had everything tied up nicely, just like it used to be.
And it was.
That was, until I was at a restaurant, holding a menu, and staring blankly at the waitress.
I just couldn’t decide. Which foods were even safe to eat? All my food safety rules were repeating in my brain. More questions were quickly flooding in, one after another. I didn’t know what would be OK in my stomach, or which items would make me nauseated later. Would I like the taste, or would it taste like metal? When they presented the food to me, would the smell alone make me hate it? I didn’t know which foods I liked to eat anymore, not really. Do I like French Onion Soup? I used to…
 “No, I don’t know what I want! Yes, I need another minute!” Grr…
Food, however, is not the only change.  Shopping for clothes is another disaster. Truth be told, getting dressed every morning alone is itself a conundrum. The body I had had for years, and had been used to dressing for years, is now very different. All the clothes I loved and felt comfortable in had to go. Things are tight where they should be loose (thank you steroid belly!) and loose where they should be tight (hello clamshell incision!). It’s like starting over from scratch. And for a person who is already facing body insecurity (raise your right hand if you’re a woman), having to deal with a completely morphing body is a little bit like going to sleep a kangaroo and waking up a cricket – you can still hop, but you know something’s just not quite right. But, you just go ahead and hop along, cause that’s what you gotta do. You’re a cricket, after all.
And then of course there’s all my new “sensitivities.” Food sensitivities. Drug sensitivities. Chemical sensitivities. Fragrance sensitivities. Sensitivity to the sun. Sensitivities to this sentence.
Seriously though, since my surgery, my new transplant body has decided to become sensitive to so many products and items that I previously loved, and therefore had to stop using immediately or even throw away.  My friends and family have inherited some really nice products this past year though, so good for them! However, it is difficult when you’re standing in the Walgreen’s shampoo aisle for thirty minutes with your eyes glazed over, wondering if people around you think you’ve finally gone off the deep end.  It took a trip to the dermatologist to finally clear up everything on that front!
My new transplant body also doesn’t have the right sensations. In the places where I should feel, like my fingertips for example, I don’t. In other places, where I would rather not feel as much, the bottom of my feet perhaps, it’s too much, to the point of having the sensation of walking on fire. I recently got a splinter in my big toe – oh my! I won’t tell you what descriptive language I was wanting to use about that fiasco. (However, I did learn not to walk about on my porch without shoes, so lesson a valuable learned). I’m cold when everyone else is warm. And when everyone else is freezing, I’m burning lava hot! I’m so happy I can control the thermostat in our house from my phone. Which probably explains why everyone else is freezing… “Maniacal laugh, maniacal laugh.”
My inclination to figure out my new life immediately hasn’t worked out. I’m over a year out now, and I’m still trying to make sense of my diet, but everyday is progress toward a happy belly. Also, I find that Sarburst SuperFruit candy fixes just about anything that ails you.  I’ve purchased a few items of clothing that have made me feel better about my new self, and Pinterest has helped me realize that my body shape has gone from “pear” to “lean.” They have some really great tips for dressing shapeless bodies on there! And I followed the advice of my doctors and WedMD about what to do about my sensitivities, and have found some relief. (No, not WebMD. Just kidding. Never take WebMD’s advice about anything!)
Other than these very practical (and unpractical) ways, I also have found that the following things have helped, and may help you too.
Don’t Sweat The Small Stuff
As cliché as it sounds, if you have had major surgery or illness, especially transplant, your body is going to go through massive changes due to medications and the general healing process.  Stressing over every little thing that is going on with you is going to effect how you heal, and also aggravate your situation. Let alone, make you feel worse overall! So, even though it will be hard, try and not focus on small problems. Let them pass.
Allow Yourself to Laugh
Frankly, illness, surgery, transplant- it’s tough! All these changes, the whole process, it’s probably the most difficult thing you’ll ever have to do. It may even be embarrassing at times. But, if you allow yourself to see the humor in things, and let yourself laugh, even if it’s at yourself, things won’t feel as dreary, even when they are. “Laughter is the best medicine.” So, so true. And important.
Rely On Others
When you think you don’t recognize yourself anymore, someone else still does. Your spouse, your parents, your best friend.  When you need help figuring out an identity problem, even if it’s as simple as what you want for lunch, rely on others. Your family and friends are there for you because they love you. Use them as a resource.  You’ll be glad you did.

And When All Else Fails… Cry
Yeah, I said it. Cry! Why not? Who says crying is weakness? Whoever started that rumor obviously has never tried it because I’m telling you what – it feels great! Sometimes, you just got to get the inside out. And sometimes the only way that’s going to happen is to cry. Cry, cry, cry and cry some more.  And afterwards, you’ll feel better. You can pick yourself up, put your plan back into place, and try again.  Take it from a newborn, recovering, repressed crier, it really can help.  Covering over how you really feel, and faking it for others all the time, even in front of those closest to you, will not help. It will only make you feel more frustrated about what is going on.  So let loose! Cry a little. Or a lot.

So, in conclusion, what have I learned about my new transplant body? I HATE ONIONS. I hate them. They are disgusting nastinesss. I do not like the way they smell, taste, and they make me so nauseated when I eat them that I pretty much want to die.  One thing down, about a million to go.

  1. Julie Doherty

    Wow, such a Great post. Thank you Miriam. You definitely touched my heart and encaptured the whole art of changing to meet your body’s needs and come to loving it with all of the changes. I will definitely share your post, it is great support and insight into working through chronic illness, disease and moving forward. Love and Blessings to you. xx

    • Miriam

      thank you Ms. Julie. Such kind words from such an experienced Blogger and health professional mean a lot! I appreciate your support???

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