It’s a mess, but it’s not the end

Here I am again. I got nothing left.

The one year anniversary of my blog came and passed this December. I didn’t have the energy to write, let alone an idea what about.

The plain truth is that I’ve been feeling worse than I have in a long time. As always, my health is a complete mess. I don’t know whether to laugh or cry half the time; I usually end up doing one or the other– or both. I’m sure many of you know what I mean.

Chronic illness is such a strange beast.  It’s hard to pin down. Some days, I stand in awe of the wisdom and maturity I’ve gained on this hard path; on others, I can hardly stand the thought of what I’ve suffered and how little I have to show for it. I think the truth is somewhere in-between these extremes.

 

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Photo by Elisa Riva

 

It’s hard for me to give details on how I’m doing. I’m afraid I’ll sound dramatic or attention-seeking. I know I’m not. I also hate feeling like I’m being a burden, because I know everyone who reads this probably has a thousand and one problems of their own. But today, I am going to be especially honest.

I’ve had some puzzling new neurological symptoms. At first, I thought they were side effects of a new medication, so I cut out the medication. The symptoms remain. I was almost completely numb in my face, hands, and feet. It was a bizarre feeling, to say the least. It scared the heck out of me. Now, it comes and goes in my face. I’ve had increased nerve pain and short periods of shaking and/or muscle spasms. I have no clue why. Neither do my doctors. They have been no help whatsoever. I’m unsure if they think it’s harmless, or if they think I’m exaggerating/lying. (Insert eye roll.) I hope it’s the first. Either way, they think I should just wait it out and refused to refer me to a neurologist.

This new development has left me exhausted. Don’t get me wrong. Christmas was wonderful. I celebrated with family. I participated and laughed a lot. Now that the holiday season is winding down, I feel like my health is hanging over my head like a dark cloud.

My therapist told me I should accept that I may never have a diagnosis. Not only for these new problems but for anything.

I can’t accept it, though.

I’ve received conflicting diagnoses from different doctors who, of course, all disagree with each other. I have done extensive research, and based on my family history, I have a very good idea of what’s going on. Still, it is a struggle to get help. You all know how it is.

I have an appointment with a geneticist in February 2019. If they can’t help me, it’s doubtful anyone can. It’s hard not to place so much weight on it. I don’t want to get my hopes up. Still, I’m desperate, frustrated– beyond that, I’m beginning to feel that my therapist is right. Maybe I should accept I will never get a solid diagnosis. The idea goes against everything I am. It terrifies me.

Does that mean I’m accepting defeat?

No.

But maybe I can continue on without validation, without help, without diagnosis.

After all, isn’t that exactly what I’ve been doing all these years anyway?

I’m weary just at thought of this, but I’m stronger than I give myself credit for. God has carried me through before. He’ll get me through whatever comes next.

To all my medically complicated friends out there, the same goes for you. Our lives can be less than ideal, to put it mildly. More often than not, they’re hellish.

I don’t know about you, but I’ve fought much too long and much too hard to give up now.

This is not the end.

I’m bone-dry, face down in the dirt, with nothing more to give.

Still, this is not how it ends.

My story isn’t finished yet.

 

One thought on “It’s a mess, but it’s not the end

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  1. I’m sorry you’re having such a tough time lately. I hate when doctors brush me off like that. I’m also anxiously awaiting an appointment that I hope will finally give me answers, and I’m not sure what I’ll do if they don’t take me seriously. I want to get my hopes up so I feel like things will get better soon, too, but then what if it doesn’t work out? I feel your pain. Hang in there!

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