REBLOG: Invisible Scars: My Life Post Transplant

While I don’t have Cystic Fibrosis myself, I have some friends who do.

I can also relate to a lot of the same heartaches faced by other young people with lung disease.  That’s why I’m re-blogging this post today even though it is a bit older.

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Numbers…Love to Loathe Them

Math is coming back to haunt me.   Numbers are invading my life.   I’m in to my third month of waiting.   I have another appointment at the end of the month & I’ll have some decisions to make then based on what’s been transpiring.

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Sponsored Post: Dear Harried Harriet

Disclaimer: “This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All thoughts & opinions remain my own and I was in no way influenced by the company.  Join the Selfcare Movement here.

(This particular letter is not based on any one instance or experience but an amalgam of many different reactions & past experiences as well as stories shared with me by other people with lung disease & those that love them.  Some of my response in the letter below is also based on things others wished they would have been able to say to other people when they had a less than pleasant experience.) 

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Guest Blog Share: A Brief Tantrum

Erin Gilmer & I have became fast friends when we started interacting on Twitter.  She & I relate on a lot of levels what it’s like to live with chronic illness.

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Grief Landscapes Project

I’m going to let the power of this art project by Mindy Stricke speak for itself.

I know I talk quite a bit about grief, loss, death & dying here in my blog on occasion, but when you’re forced to confront your own mortality at an earlier age it becomes necessary to do so.

It doesn’t make it easy of course, but it’s an important conversation to have with oneself & others.   Continue reading

The Scapegoating of Disabled Voices & Activism

I’ve avoided this issue for a long time, but again want to repost Kim Sauder’s work because it opens an important discussion. I know the devastation of suicide first hand. I do not condone that. However, I think the distinction of assisted suicide or assisted death is much different. It’s an individual choice often made when or considered when quality of life is dwindling in the context of terminal illness or other contexts. There are arguments that outside of terminal illness there isn’t a valid reason or that depression is at the root of it. I don’t know that I agree fully with that.  Yet, I am open that there might be disabled people who might make this choice for reasons of their own & not just because they are disabled or depressed.  I just don’t know any yet in this situation, but I do believe they exist. I wouldn’t assume to speak for them either way though. But I do support the right to make their own decisions.  I believe very strongly that if given the choice, people should be able to die on their own terms regardless.  I do see the problems where it could be used to exploit or take advantage of disabled people for personal or financial gain so it’s a complex issue for me. It’s not a debate because I see both sides. A lot of this is also exacerbated by the climate of Hollywood as well as accessibility in healthcare. But I’ve had a lot of friends pass with hard & horrible circumstances. Their choice to withhold or stop certain treatments is not suicidal, so why should it be considered if someone chooses death on their own terms in a terminal illness or a disability context if it is for reasons related to quality of life? I only bring this up not to stir the pot or tell people how to feel, but to point out such decisions are not made lightly. I held off on even talking about this for a long time because I didn’t want a debate or argument about how wrong I am to acknowledge some people may make this choice for themselves. Or that I even looked into it briefly to explore how I felt about it for myself so when I was exploring both end-of-life decisions & transplant I could be fully informed as to whether it might be something I would explore if it came down to it. Also to decide how I felt about it. I decided against both times it came up for me to look at, but I reserve the right for others to feel differently & allow them to come to their own conclusions for themselves. As usual, Kim articulates this much better than I could even bring myself to (& I tried several times).   I do feel that the book & movie Me Without You is not an accurate representation of either disability or assisted suicide. Yes, I know it’s fiction, but even solid fiction authors research their subjects & plots to bring a sense of realism to their fictional stories & make their characters as strong as possible.

Further, I’ve had my own views completely picked apart & discounted because my disability does result from a terminal disease.  But my disability existed throughout my life, invisible before any terminal diagnosis entered the equation.  Yet, are not my feelings about my own experience just as valid as any other counterpart? It doesn’t negate the fact I’m disabled.  I bring this up to have a civilized discussion about the two subjects, not to be dismissed because my situation happens to fall in the terminal diagnosis “camp”.

crippledscholar

I really wish I could stop talking about Me Before You, but it keeps being a source of topics that require discussion. At least this time I can leave behind the book itself, I will instead try and tackle some of the things that have come out of the disability community’s backlash against the novel and film.

In my original post on the book entitled Why are You Complaining? Some People Actually Feel that Way. I tried to take on the all to common defensive argument that as long as some people actually experience certain things or opinions, any and all fictional representations of those experiences is acceptable. I wrote,

Here’s the thing, there is a big difference between actual human people having feelings about their actual lives and experiences of disability (which I’m not here to criticize) and a fictionalized account written by someone who isn’t disabled and…

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Interesting News Article: Matt Cartwright Proposes Incentives To Spur New Organ Donors

I’ve always held Congressman Matt Cartwright in high regard (even though he’s not in my district) because he does try to take bipartisan approaches on several issues.  I was excited to see one of my local news outlets reporting on one of his new ideas.

He’s come up with a unique way to spur donors & potentially resolve a hot button issue concerning potential compensation for donors.

I have yet to touch that hot button in a blog post because I was ambivalent on how I feel about it & am still thinking on how I want to articulate my feelings.

It’s a complex issue.

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Here Comes The Judgement…

Shortly after Prince’s death, I posted this response as to how the use of opioids in chronic pain & illness is grossly misunderstood in most cases both in the medical community & general public.

I didn’t always need them. I’m glad I don’t have to take them daily, but I am not ashamed for using them when I need to. I refuse to feel guilty for caring for myself.

As I’ve stated before, it’s very easy to pass judgement when you’re not the one ACTUALLY in the situation.

But try living in end stage lung disease, or another problem that results in constant pain & the tune you sing may change.  It certainly did for me.

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Review: Tricella (Liif) Pillbox

Before I knew about the Transplant Hero App & PillSuite, & while I’m waiting for Dr. Poket, I found the Tricella smart pillbox.  When it came to me I decided it was too small for me to use every day. I figured it still might work for travel or just for my vitamins alone.  So I decided to try it out.

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