A Hard Day: Life with Immunodeficiency

Jessica

Jessica — jgb

I wrote this on March 9, 2017. I chose not to post it because I worried that some people would judge me as wallowing in self-pity. Today I read it and see how far I have come. For you to understand the value of recent lessons learned, it is important that I share this post from March 9th.

When I started my blog back in 2014, I titled it with intention. Chronic migraines were controlling my life. I decided to start this blog with the goal of focusing on my “Feel Good Days” in attempt to feel some control over chronic migraines.

Fast forward a leukemia relapse, remission, numerous infections and a diagnosis of immunodeficiency. Almost 3 years have passed since I started this blog.

Today, I sit in a puddle of tears because I recently pushed past the small reserve of immunity I have and am quite sick. Sick is never fun. I feel miserable; don’t you hate that flu-like feeling too?.

I am immunodeficient from chemotherapy I take for leukemia. If you Google “What is Immunodeficiency” you will read

Immunodeficiency (or immune deficiency) is a state in which the immune system’s ability to fight infectious disease and cancer is compromised or entirely absent”

Unfortunately I am severely allergic to the IGG supplements that most  patients with immunodeficiency or even immonosuppression take.

The type of leukemia I got requires daily chemo for the rest of my life. And trust me I am GRATEFUL for the chemo because I do want to live and when I had the active leukemia that was just horrific.

So, my options for staying healthy are to stay away from crowds, use excellent hygiene, avoid sick people, eat a nutrient-dense diet and take safe antivirals (like elderberry) that won’t interfere with my chemo.

I do those things religiously.

This is the thing: I love people. I am a person who gets my energy from being around people so these past 2-1/2 years of learning to live a much more isolated life have been horribly sad. I feel like I have done well. I created an online community through Instagram. And now that I am healthier I do as much as I can to get out and be active, be with small groups. 

Everyone has hard days. Mine typically involve fevers, body aches flu-like feelings and questions about the possibility of pneumonia and ER trips.

Days like this, the hard days, I feel so darn alone. I feel hopeless. I even wonder why my life has been spared because my mind will go to that farthest place of “how can I live so lonely for so long?”

But I forget:

1.God does miracles: the very fact that I am alive and doing as well as I am is miraculous

2. Medical advancements are always being made and something may come out tomorrow to help my immune system. 

I must do what helps me. Practice Gratitude:

  1. God gives me shelter. I have a home and warm clothes, warm blankets to help me with the fevers.
  2. God gives me the ability to work from home with as both a telepractice speech therapist and a Beautycounter consultant. Through those jobs I can bring income into our home. I can no longer do what I used to be able to do.
  3. It is a sunny day so while I work today I can sit with layers of warm clothes, a mug of anti-viral turmeric bulletproof coffee and glance out the window to see a sunny day
  4. I DO bounce back faster now than I used to; that is a fact.

I will be better soon.

2 thoughts on “A Hard Day: Life with Immunodeficiency

  1. I have also had to limit my contact with others due to medical issues, although it is not to as great a degree as you have had to. The loneliness that results is difficult. Something that has helped me is a “pen pal” relationship with someone else who has similar struggles even though they are not for the same medical reasons. I am also finding that I am enjoying studying the Bible and Biblical materials more. Specifically, I enjoy “New Morning Mercies”, by Paul Tripp, and Biblical counseling materials and downloads here: http://store.faithlafayette.org/browse-by-type/mp3s. I also have to frequently remind myself that God has a plan in it even though I frequently struggle to see what it is. It is hard to hear others say that, but I find comfort reminding myself of it. I will pray for you.

    Liked by 1 person

    • Thank you! I needed that this morning. It always helps to remember that I am not the only one going through this so I appreciate your testimonial as to how you live with similar life changes. I will look into that study. I am actually doing better than when I wrote this past post. I am working on an update with some new things that I am doing. I will pray for you too ❤

      Like

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