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Every time I listen to Soon You’ll Get Better I cant help but cry. It takes me back to January 2011 when my 4 year old niece Taylor was diagnosed with Idiopathic Aplastic Anemia. Those were the worst months of our lives, never knowing if Taylor would ever get better. Trying to explain to her 7 year old sister why she had to live with me while her parents were away so Taylor could get treatments. Worst of all was having to watch them drive away, rushing a 7 hour trip by car because flying could cause her blood vessels to rupture and kill her, and knowing that there was absolutely nothing I could do to make her better.

This past Spring, Taylor (my niece Taylor) celebrated 4 years in remission.

#taylor swift #soon youll get better #idiopathic aplastic anemia #bone marrow failure

Confession #2,802

My kidneys dropped from 36% last week to today at 29%. So I decided to do chemo and yeah…. Could die…/Could not. I mean I barely survived meningitis/septic shock… almost died before my 21st and now I’m almost 30.

I wanted a second opinion from my Lupus doctor. And I called twice and the nurse is like well my daughter had brain tumors you’ll be ok. My doctor said it would weakened my immune system even worse. Mess my bone marrow up. They are trying to kill my immune system to control my lupus. So my lupus doctor finally called and freaked me out. Saying if I don’t do chemo, the lupus will destroy my kidneys and then try to attack my lungs and brain. So…. I’m terrified.

And…. Im losing weight like crazy and im telling doctors but no answers. Two weeks ago I was 310 then last week 295. And today 281… So that’s not healthy.

Then moms dementia is worse. She’s 85. But can still pay bills but the memory and things she does… Nursing home is out. My sis and I will be homeless. Sister is in chronic pain, spine issues and knees issues… but is driving me around. Being at my appointments… I feel like a burden and useless I can’t help them. And I’m scared of dying (because there’s a chance. I barely survived meningitis/septic shock). Sigh.

#chronic-confessions #chronic illness #chronic community #spoonie #spoon theory #kidney failure #chemo #chemotherapy #meningitis #septic shock #lupus #Weak immune system #bone marrow failure #tw weight loss #tw weight mention #dementia #chronic pain

Confession #2,428

I spent all night in the hospital. My heart rate was pretty elevated as was my blood pressure. I had to get a unit of blood and a unit of platelets transfused. The reality that I could die from this condition is starting to sink it more and more. The fact that bone marrow failure isn't said lightly anymore is suffocating me. The fact my life is about to become a series of counts and doctors appointments is terrifying.

#chronic-confessions #chronic illness #chronic community #spoonie #spoon theory #hospital stay #high heart rate #high blood pressure #blood transfusion #platelet transfusion #tw death mention #bone marrow failure