Severe Combined Immunodeficiency (SCID)

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Severe Combined Immunodeficiency (SCID)
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Putting it all away?!?

**long rant **
So after a very stressful move over the weekend, that’s still not complete, I’ve had back to back massive panic attacks/PTSD flashbacks regarding my Sons passing 01/2017. Our new a/c intake sounds like his oxygen machine and there’s a weird beeping coming from next door that mimics his PCA pump on his IV pole. *Now the beeping and hospital sounds have stuck with me since he passed but I’ve had someone else over as well to make sure I wasn’t crazy*
The results of this was an “intervention” of sorts with my father and husband who state that it’s time for me to buy my Sons belongings away and allow myself to heal, especially since we’re starting over with this move. WTH! A grandfather and Dad saying it’s time to allow yourself to heal and putting his stuff away will help??!! As my sons primary caregiver through his life/illness and treatment, that’s not going to make it better.
I can’t really be alone in thinking that right?? #ChildLoss #PTSD #Depression #Anxiety #SevereCombinedImmunodeficiencySCID

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Yesterday, my condition felt a little less "rare"

After being diagnosed with #scidada at 2 years of age, I have only known one other person with it who was around my age. And for that, honestly I am grateful, because I know many have not had the opportunity to connect with someone else who has their rare condition.

Many of the people living with SCID-ADA are young children. Just knowing one other person my whole life, still felt a little isolating, because we both knew others were out there, but little effort was made to connect the two of us with them. We wondered, what's going to happen to us, 5, 10 years from now? Or why is this specific symptom happening? There was no way to know what was "normal."

And yesterday, by the means of some higher power, a 33-year-old with SCID ADA joined our online group. My heart was bursting. She said she also struggles with chronic pain and lung issues. And somehow, while I was disheartened to hear she was experiencing those things, I felt so good. I didn't feel like I was the only one experiencing this kind of pain with my condition. And so yesterday after 32 years of feeling quite alone with SCID ADA, I felt a little less alone and a little less rare. #CheerMeOn #RareDisease #SevereCombinedImmunodeficiencySCID


When #darkthoughts become a part of your #ChronicIllness

I don't like to often admit they're there, but inevitably, dark thoughts can creep in when you're dealing with illness constantly. Sometimes it's helpful to share them, so you realize it is normal to have these thoughts, and it's ok to go into the darkness sometimes -- as long as we don't stay there. For me, one thing I think about often is my mortality, and that in patient advocacy, especially for #RareDisease , many of those I know are scared every day about how long they'll live. It is sad and frightening. Do you have #darkthoughts ? Feel free to share and feel less alone with them. #ChronicIllness #SevereCombinedImmunodeficiencySCID #MentalHealth