jumping through hurdles

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 Porphyria. 

When my GP first told me that he was convinced that I have it 6 years ago, I didn't know what that meant. 

Today, I still don't know if I actually have it. 1 out of 3 tests was positive but it's rare and no one but my GP will take the idea seriously. So, honestly I gave up. For a few years now. I had one awful year of test after test that nearly damaged my nerves and aggravated my symptoms until all I could do was cry. The pain was unbearable and I was just...finished. Doctors didn't believe me. They told me to see a therapist. So I did. It didn't change anything. 

If I do have Porphyria, as my GP thinks, it would explain everything. It would explain the pancreatitis doctors thought I had until my follow up appointment when they realized they had misdiagnosed the problem and had no explanation to offer me. It would explain my seizures and how they didn't show up on the EEG because they aren't an electrical imbalance, but actually neurotoxins in my blood stream. If I have Porphyria, it would mean that all my therapy and self care and years of working on managing stress really has paid off, it's just that I'm still sick. So the dizziness and random mental confusion and sudden muscle weakness and paralysis and...every symptom I have been suffering from since I was 17 would have 1 solid answer.

Getting this diagnosis would change everything for me. It would make it all make sense. 

I'd have treatment options even if I chose not to try them. I'd have clearer lifestyle guidelines to experiment with to find out what works best. Adopting a few of them has made a significant difference already! 

So 2021, I'm going back in. I'm going to get an official diagnosis for what is most likely Porphyria and then I will, finally, move forward. I will be able to say with confidence that I'm sick even though I don't look it. I will know without a doubt that I am not mentally ill so I can breath easy instead of trying so hard to work on myself. I will know without a doubt what is physically wrong with me and be able to face it head on, like I do most things. 

With all of you as my witness, I am going back to the doctors in January until I know one way or another. 


Wish me luck,
KELLY ANN

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