Join the Conversation on
443 people
0 stories
63 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in rare
    Community Voices


    Community Voices

    Invisibility Is (not always) A Superpower

    I start to get anxious just thinking about it. It should be something so simple, but it’s not. The careful planning, assessing and attention to details is vital. What’s happening before this? What’s coming up in the week following? It’s not a question of if she’ll get run down. It’s not a question of if she’ll get sick. It’s a question of when. And…is that birthday party, week at day camp, sporting event, etc actually worth it?

    But here’s one of the worst parts: you won’t get the weight of our decision. You won’t know why we couldn’t play that night or why we skipped the game. Because, the fact is, you don’t understand that she’s sick. Not really.

    You know we have the appointments. You know we get blood draws. You even know we spend nights out of town to see our doctors. But, you don’t understand. Your kids get sick, too. Your kids also get tired and emotional. Plus, she looks just fine.

    She looks fine. But, that’s one of her superpowers: invisibility. She saves it for us. She keeps it closely guarded. If you ask her how she’s feeling, she’ll say, “Good.”

    What you didn’t see was waking up and complaining she was tired. What you didn’t see was the terror in her eyes when she had blood in her stool- again. What you didn’t see was her complaining her belly hurt, or worse- getting sick. What you didn’t see was her retreat upstairs to lay down instead of play. You didn’t see her struggle at school because she “just couldn’t think “ or she’s “just not feeling herself.” The simplest questions tripping her up. What you didn’t see was her breaking down and crying over and over again from 4 pm on because she's so tired that she’s an emotional wreck. You didn’t see the multiple medications she’ takes to help her feel ‘normal.’ You didn’t see her as she got yet another a fever, yet another antibiotic, yet another doctor visit. And, you didn’t see her sleep a full 12 hours just to get up and do it again.

    She has a superpower of invisibility. You may not understand why we’re not coming, but I promise we would be there if we could.

    #Rare #PID #Fatigue #invisible #chronic #medicalmom

    Community Voices
    Community Voices

    What do you wish you had more of?

    <p>What do you wish you had more of?</p>
    2 people are talking about this
    Community Voices
    Community Voices

    How can I get my body to understand it's time to sleep? #Rare disease #sleeping problems

    Although I'm quite new in the group, I'm really busy helping where I can or at least hoping to.
    Since a few months I am really awake in the evenings, preventing me from sleeping when I should be.
    I wake up as usual and I don't sleep during daytime, so I'm sure to be tired in the evening. But than I really get 'alert'. I think it's a drug side effect. In my family many get an opposite reaction on drugs which should make you tired and drowsy.
    I know I can't take anything with codeine after 4 PM or I'll be awake all night. Even hardly get affected by valium. Now I have to take morphine to cope with the pain. I think it's having the same result: wake me up. I take 2 extended-release pills a day and an extra instant form when even the pills are not enough.
    Any suggestions how to teach my body to sleep at 10:30 PM instead of 2:30 AM?
    Especially when I start studying again in February, I'll definitely need my hours of sleep. So I still have time to get this fixed.

    Community Voices

    Found out this week that I have salivary gland cancer. This is a rare form of cancer that is often treatable by surgery alone. That is the good news. The thing that has me concerned is the potential for facial paralysis following surgery. Anyone out there have a parotidectomy?

    1 person is talking about this
    Community Voices

    What do you wish others knew about your rare disease?

    <p>What do you wish others knew about your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
    1 person is talking about this
    Community Voices

    What matters most in your rare condition?

    <p>What matters most in your rare condition?</p>
    2 people are talking about this
    Community Voices