Tired of being tired! 😴

With Hemolytic Anemia, what is a girl to do? Most people think an iron supplement will fix what ails me, if only it were that simple. I am not iron deficient. My body is making more than enough red blood cells, the problem is, they are dying off too fast which is causing me to not have enough oxygen in my blood to supply my organs efficiently. The dead red blood cells appear to be collecting in my spleen, causing it to be enlarged. What does all this mean? I have no idea. My doctors are stumped. My Oncologist/hematologist has shared all my reports with her colleagues at Mass General, they too are baffled at the highs and lows of my blood work and the results of my bone marrow biopsy. These results are just not adding up and they are not telling a clear picture. The good news is that I don't have an obvious cancer such as Hodgkins or non Hodgkin’s lymphoma. No obvious signs of Leukemia although the rarer leukemias haven't been completely ruled out yet. Next test is scheduled for November 10th, for a PET CT scan which will show my doctors how my cells react to a radio-tracer, which may show if there is cancer that they are missing with other tests done so far. Bottom line is, the anemia is kicking my butt. I’m exhausted. I have so much to do and no motivation to do it. Every doctor appointment or test seems to be further and further apart which is just more weeks & months of waiting, wondering and battling the exhaustion which is causing a lot of brain fog lately. Only trial treatment right now is self injected B-12, so far it has done nothing. So for those who have asked, this is all I know so far. So you can stop telling me “you look tired” which I know is a nice way of saying that I look, like 💩. I do see my reflection in the mirror and yes, I also see the dark bags under my eyes and my pale skin. So just bear with me on my appearance, my forgetfulness (brain fog), my emotions and my impatience, its all part of the anemia. 

I would appreciate prayers though. Prayers for answers and for a good outcome. 


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