I like to think that I’m “normal” now. After all, I don’t have aplastic anemia, and I don’t have Hepatitis C that I got from a blood transfusion while trying to get rid of the aplastic anemia. I don’t have any obvious side effects from the West Nile. The holes in my ear drums from getting tubes as an adult that cannot be repaired haven’t affected my hearing that much. My weakened immune system isn’t a huge problem anymore now that people are good about self-quarantining when they get sick.
But then I’ll have an allergy episode that over the course of 24 hours turns into a sinus infection and bronchitis and knocks me on my ass for a week. Then six months will have passed and it’ll be time for me to go get screened for liver cancer from the cirrhosis that long-term chronic Hep C caused before I was able to get it treated. Then a new variant of COVID hits the news and terrifies the world. Those times are when I’m reminded how abnormal I still am, and it bums me out.
♥️🧡💛💚💙💜 Warning Long Message. Please take time to read. Thank you I wish more people understood... What she has is not a cold or the flu. She will never get better. A nap won't help. She is not lazy but she is tired to the point of a lethargic state. She's on meds to try to make it easier to thrive and merely survive. Many people say that she's faking it or that she just needs to push through it. Well sometimes she can push through the pain and live her life, but there are days where she can't walk without having to hold on to something. Her joints hurt. Her body hurts. Her mood varies, and she is sad a lot. She tries to control her mood swings and intermittent bouts of depression. She takes her meds daily, and more vitamins than you could fathom, to help keep her up but most days nothing works.
She has an autoimmune disease.🦄
I'm watching those of you who will take the time to read this all the way to the end.
Hi One of my dear coworkers, and amazing person, just found out that her cancer is back. I want to show her that I’m here to listen and support her, but I have really bad social phobia and also lost my dad to cancer, so I’m afraid to offer something I can’t stick too (because of my own issues). So I wonder if folks who have lived with , aplastic anemia, or other rare diseases have suggestions of what you found helpful, touching, meaningful.
This is the first time I’m hearing people say just how I’m also feeling. Aplastic Anemia/PNH is not an illness that shows on my face, so when the other hockey moms want me to drive the kids to practice as a single mom more than they drive as married moms, it’s hard to be understood. The fatigue at times would scare me when I drove the crew in the evening. As a single mom of three 28,20,20 yrs old, I’m not sure how I did it all but I did. Faith , love for my kids and hope . Not all at the same time but always a little of at least one of these feelings got me through each day. I did not think I would live to see my children grow but here I am, 20 years later. Now what ? Lol that’s the question. This is a whole new ballgame and not sure how to find my place in this new chapter yet. #RareAndMighty