What the HHT?

A Voice for the HHT Community

Real Talk From the Heart

1 Comment

By Janice Jones

janice-jones-3The past few months have been such a challenge and very difficult. At last check, my blood levels were an 8.7 and dropping. My iron saturation is below the lowest and I’m definitely not creating any hemoglobin (blood). I’m well aware that they have most likely dropped even more, and I need to verify this, but unfortunately, I just don’t want to deal with it.

As with anyone dealing with sickness and disease (dis ease-discomfort) from an ailment there is no cure for, the emotions and feelings can and often do become compromised.  There are days when I can’t stop thinking about how I’m going to get through the day and wonder about the effects all of this is having on my lungs, heart, brain, etc.

People tend to only think of the physical aspect of HHT; but mental and spiritual exhaustion is very prominent. Yes, I’ve been there, done that, and have recently visited that not too long ago! I don’t just want a few days to lay and vegetate, I literally want my mind to just STOP and forget there is a giant called HHT I face daily.

Regardless of what HHT is throwing my way, I have to still function and live a life I’ve been called and ordained to live. This means that I work, continue to educate myself, maintain a home, have a marital relationship, have friends, be a mother (and soon a grandmother), be a servant in the ministry, and fulfill the many other countless capacities I’m called to serve in.

One of the most difficult things for me this past  Autumn was I literally had to be still, remain in bed and rest because my body was taking such a hit from the disorder. I’m a very proud and independent woman. Therefore, if I’m not on the move and in the midst of producing or making something happen, I feel incomplete and as if I’m not succeeding.

Day by day, however, and by God’s grace and power working in my life, I’m learning to let go and accept what the Lord allows in my life; especially as it pertains to this disorder.

quoteI literally have to be determined to just live. I have to be determined to just breathe. I have to be determined to take in life, joy, laughter and peace. I have to reflect and think on those things that are pure and uplifting such as becoming a first time grandmother and being able to share my story, encourage others and be a part of the movement for a cure.

I previously referred to HHT as a giant. It indeed is my giant that I have to battle and will OVERCOME! I stand firm in my faith in Christ that I will live and not die and that I will leap over this giant in my life and conquer it. That is my hope and prayer for everyone else.

To my HHT family during this new year, please be encouraged and take rest. We will make it together and secure a cure one day, one moment at a time.

One thought on “Real Talk From the Heart

  1. I love you Thankyou for the inspiration motivation to keep going
    Every day putting one foot in front of the other so to speak is sometimes the hardest thing to do
    Today I will keep going sister it’s great to read something and think I’m not alone
    Thankyou
    Sharon from Karratha Australia 🇦🇺

    Like

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