Personal Story

D. Rice

  • 65 year old male
  • Portland, OR USA
  • 3 years after diagnosis.
  • Only one in family with PA
How could someone’s life be so bleak and so fraught that they would feel like ending it? Why decide to stop, rather than to choose to fight back? I was thinking about this phenomenon while writing a story about a friend who had committed suicide. This quotation is from the last paragraph of that story; “I remember him thoroughly enjoying the puzzle and that’s what’s so hard to come to grips with when people you have shared so many interesting and engaging conversations with suddenly take themselves out…. and leave the puzzle, that we were all working on together, unfinished.”

What had happened in his life that could not be restored? He blamed many things but never really pursued any type of solution for his condition.

All these years later I understand what might have been going through his mind to some degree, the hopelessness of losing the happiness in your life in relentless little increments. This is the insidious nature of autoimmune diseases. They try to rob you of your dignity and replace it with confusion and instability. I’ve seen the word ‘insidious’ many times in comments regarding Pernicious Anaemia. It is insidious.

Another bewildering aspect of this illness is the lack of proper treatment. In a cruel ironic twist the people that are supposed to be helping you are reflexively keeping you from getting better.

I spent three years telling several different doctors that this is not right. For three years I’ve been on this roller coaster of having some energy to little energy to complete fatigue. There is something else wrong I know there is. I know what good health is. We must be missing something. One especially obtuse response was, “This is the new version of you.” In other words, I need to adjust to getting older. That one made me angry. Some people my age run marathons. I sleep all day. Shortly after that last unhelpful comment, I sought out a support group and found The Pernicious Anaemia Society online. I posted elements of my situation and got immediate and thoughtful advice. My first Zoom meeting (with the Chicago based group led by Julie) this past July was a revelation.

What ‘We’ were missing was treating the symptoms and not scheduling injections according to the numbers of a blood test, a B12 test that was rarely over 500 for three years. We even stopped injections for six months because blood levels seemed to have stabilized in the high 400’s, well within the normal range.

I just completed one full month of twice a week (instead of once a month) self-injections and seem to be headed in the right direction. I’m keeping a diary of symptoms and energy levels in some detail. Something I should’ve been doing all along.

Numbness in both forearms from elbow to wrist on the outer part of the skin was the first symptom to show up; minor but disconcerting and the reason I went to the doctor in the first place in 2021. B12 @ 192 was the only test that was taken and I haven’t been referred to or seen by any other specialist. Throughout 2022 and 2023 I developed pain in my feet especially the ball of my right foot and bee-stung toes, first a burning sensation then dull cold pain, like frostbite. The worst symptom by far is the chronic fatigue and corresponding brain fog, inability to focus with a dose of anxiety, sleeping long hours, and catatonic.

Why is the harmless and inexpensive technique of treating symptoms such an illusive concept to medical professionals? It feels scandalous to me. Willful ignorance is not a quality that one would normally associate with the medical industry. What a uniquely challenging puzzle this is. Fortunately, I’m on a five-week string of normal energy levels with just a little pain in the right foot hanging around. Hopefully this is reversing out, maybe?

I want to thank all who are involved with the Pernicious Anaemia Society and its mission, and I’m grateful for its existence. I do not know what I would have done without you.

Thank you all so much.

Keep on fighting. Be relentless. Sometimes the people around you are get fatigued of your condition and are not supportive. Remember it is probably because they love you and feel helpless. Your condition is frustrating for them too. Give them a break and lean on us in the Society instead. That is why we are here. We get it. Post your questions and attend Zoom meetings. I hope to see you there.

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