• A New Year’s Check In

    Posted by Katie Griffith on January 4, 2022 at 10:00 am

    Another year has officially begun! The start of a new year can be a good time to stop and reflect on how things are really going. I don’t know about you, but I come into this year feeling hesitant. Hesitant to be too hopeful, so I won’t be let down again. I think most of us went into 2021 ready for a change, and things overall were still very challenging. When you add being a caregiver on top of a global pandemic, it can be hard at times to be optimistic. I am thankful that we have this space to be honest about how we truly feel and can encourage each other when days (and years) feel hard. How are you feeling at the beginning of this new year?

    Christina Cordaro replied 2 years, 2 months ago 3 Members · 6 Replies
  • 6 Replies
  • Karina Jeronimides

    Member
    January 4, 2022 at 2:48 pm

    I have FA and two teenage daughters.  The older one caught covid because I allowed her to go out with her best friend who had the virus and only realized it 3 days after they went out.  It turns out that on Christmas, my 15 , 17 year old and myself had covid symptoms.  All three of us had been vaccinated and two weeks before the accident, I got a booster.  The father (from whom I am divorced) did not want to shelter my daughters during his half of the winter break division, and so I got to enjoy the company of my munchkins for both Christmas and New Year’s. I had not done so since the kids were 1 and 4.  And the covid symptoms were very mild: stuffy nose, some coughing, some sneezing, some fatigue…  Anyways, things are getting markedly better.  Last year I would have been dead.  And my daughters would have been devastated.  Please, get vaccinated and boostered, cause it works.  Our science is evolving; heck in June a treatment for FA is taking place.  It might just bring a tiny improvement or just a temporary halt, but FA is an impossible illness, and very little improvement is huge.  Science is moving forward, and this is not the time to lose hope.  Covid is turning into a cold people 🙂

     

  • Katie Griffith

    Member
    January 4, 2022 at 6:39 pm

    Sorry to hear that, Karina! Glad that symptoms were mild. Hope everyone feels better very soon and has a healthy new year 🙂

  • Christina Cordaro

    Member
    January 5, 2022 at 8:13 am

    I’m glad things are going upward and everyone is feeling better!

  • Christina Cordaro

    Member
    April 13, 2022 at 12:46 pm

    Hi @karina! Just checking in to see how you and your daughters have been feeling? No complications since overcoming your COVID diagnoses, I hope!

  • Karina Jeronimides

    Member
    April 13, 2022 at 9:28 pm

    Thank you for checking in! I’m not at al used to it, and it’s very nice!  I remain optimistic in my physical assessment of covid as no physical complications ensued.  The logistical complications, however, multiplied. For one, my teenagers feel it’s ok to be more reckless as their mom handled it with no major physical issues.  Otherwise, and unbeknownst to them, my regular help ceased [i have help bathing, cooking and cleaning], and all of my medical procedures to alleviate FA were delayed by months creating several challenges at work that have only resolved recently.  My power chair also broke while I was sick, and I had to sit outside, in 40 degree weather while it got fixed.  I am thus afraid of covid because of the logistical issues that domino as an effect, destroying any feeling of normalcy I once had.  “Normalcy” is so hard to achieve, as you all know, when you have an illness that likes to pice things up  as soon as respite is achieved.   Society just cannot handle covid, even though the NYT and Fauci have called it endemic.  Or is it just that the stronger ones know how to benefit from it, and the disabled, weaker part of the population, are the ones that suffer most from it, no matter how mild our case may be?

    xoxo

    • Christina Cordaro

      Member
      April 14, 2022 at 7:12 am

      I am happy to hear that you are keeping an optimistic attitude throughout it all and that no physical complications have occurred!

      I am sorry to hear that it has logistically been an issue. I know it is easier said than done, but try to remain positive. We wouldn’t be dealt with the challenges that come with living with a rare disease if we werent able to handle it! Keep on the good fight! 😊

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