Dear Friends: What You Should Know Now That I'm Using a Wheelchair

There is this hang up many of those with some disorders have about “ending up being in a wheelchair.” Many times accepting the use of a wheelchair is when life starts to get better, and you regain what you lost along the way. In my case, Dercum’s disease simply is what it is.

Turning a much needed corner, I posted the following to my Facebook page. It’s not trying to be brave, it’s about just accepting it all so I could clear out the drama in my life and obtain something I’ve not had in a very, very long time… the luxury of just living life. There is so much pressure to “fight the illness” that in some cases, a reasonable life is lost. The wisdom comes in knowing what and when to fight, and when it’s life itself that needs to be reclaimed.

Facebook post:

“Important announcement. Please, no sad face responses. They would not be appropriate or welcomed.

I was going to keep this to just a small group, but I’m making it known by all and will never explain it again. So take note.

I have had four surgeries, travelled 14,286 miles roundtrip out of state for 12 visits to three different Dercum’s disease specialists. Treatments have ranged from standard to experimental. I’ve even spent time in a homeless shelter in another state by myself, awaiting an Intensive Care Unit bed to open up so I could undergo close observation while having an experimental infusion process that would take place over a few days.

Please don’t ask me if I’ve tried this or that. I’ve been asked that for years. You will not get a friendly answer. I feel very used up, exhausted and fed up with jumping through the hoops, and obviously I’ve jumped through 14,286 plus so far, not even counting all the local appointments and treatments.

I’ve gone from having an increased mobility day here and there mixed in with mostly poor mobility to it being really quite bad all the time. All of that for a disorder that is progressive with few treatments and no cure. There is a huge difference between my prior years with this disease and now.

I am not sad, upset, nor do I find it difficult to accept the permanent use of a wheelchair in my home and mobility scooter for when I have the need to do an outing. I am no longer having the luxury of occasional mobile days. I find much less frustration and drama in accepting all this than in trying to “chase the unicorn.”  That ongoing “chase” has really been hard not only on myself but my family as well. We all deserve better and so I am happy to see my life redirected.

My specialist whom I see is still open to any new discoveries about Dercum’s disease and she is helping me keep an eye on how it impacts my body and looking at pain control options. Her honesty, always turning the ideas over in her head, has been refreshing and so appreciated.

She doesn’t just give me a pain pill and say, well, that’s all we can do. She is looking at my life with the attitude of, what can we do to make it more workable while we see what else they learn about Dercum’s disease? So there is no giving up, and I still am getting great medical care.

And you know what? Who cares if someone uses a wheelchair to get around, or a mobility scooter? Are we defined by our means of mobility? Personally I think the burden really is to get over how we view such issues ourselves on such matters.

I am excited to just get on with life now. Sometimes we walk into the sunset as a happy ending. Sometimes we reach a different kind of happy ending: wheeling off into the sunset.”

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Thinkstock photo via Halfpoint.