Living with CVID

Time I shared my discoveries and research  on coping with CVID.  I’ve listed 10 areas of challenge.  Tip of the iceberg. There’s more, much more, than what is written here.

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  1. Many who have CVID live in fear that a simple cold will place them into a medical crisis or cause their death. Because of this reality, it’s a challenge to not internally react to a cough or a sneeze when in a public place. A person with CVID must always weigh the possible cost to their health when choosing to attend, or not to attend, family functions, outside events or gatherings. Personally, I find myself immediately praying, please protect me and let that simply be an allergy or a routine cough or sneeze. Something I never considered or gave a 2nd thought to before my diagnosis.
  2. Always having to ask the question of family and friends before visiting or before they come to visit, “Are you ill? “Have you just gotten over being ill?” “Has anyone in your family been ill”, etc. If family and friends don’t understand the disease, you come across as paranoid or at the very least a “scaredy cat”. In order to not offend family and friends, many just don’t ask and hope for the best.
  3. When guests come having to explain the routine one has put into place to minimize risk. Some will gladly do all that you ask and even go above and beyond. Others simply see you as paranoid and do very little. Personally, I’m fortunate in that my family and most of my friends, while they may not completely understand the disease, are willing to go above and beyond in making sure I avoid the potential virus or germ. Even if it means canceling plans and staying away; not seeing me until they feel 100% well.
  4. Wearing a mask when going out in public. I discovered some wear a mask and others don’t. Personally, I do. The more I’m able to do outside of infusion therapy the better; from this gal’s’ perspective.  Wearing a mask, isn’t a big deal in and of itself, yet, they’re hot and often feel suffocating, making them uncomfortable.  When first wearing a mask in public I was stunned at how many stares I received. I was taken aback at the fear revealed in others as they gave me a wide berth.  Today, I simply find it amusing.  I smile knowing that their wide berth’s a blessing.  For I never know what disease they may be transmitting 🙂
  5. The constant washing of hands and using sanitizer. The jury’s still out on the effectiveness of hand sanitizing.  I’ve chosen to use them along with washing hands often; it’s routine, I don’t even think about it.  With that said, I’d love to not have a subliminal reminder, in every room, that my body is broken.
  6. When family members, especially children are ill, not being able to care for them (because one must guard at all costs to keep themselves well) is heart wrenching for a mother. Having to wear a mask when around them until they are well. Praying they understand they are not bad. They haven’t done anything wrong.  Although from all I’ve read children seem to do much better with the ins and outs of coping with a parent’s disease then perhaps the parents do.
  7. Some who deal with this disease must miss their children’s games and extra-curricular activities due to their need to avoid crowds; especially during the cold and flu season.
  8. Coming to terms with the diagnosis of CVID, discovering there is no cure and only one treatment… lifelong infusions… is daunting. Not to mention the potential financial burden on a family. Some experience little to no side effects from the infusions, while others have moderate to severe side effects. Did you catch it?  The treatment is lifelong.  Unlike chemotherapy and other treatments, you don’t do it for a while and get cured or go into remission.  Nope, it’s lifelong. Or at the very least until medical research finds a different path to treating or healing CVID.  Personally, the risk of blood clots or blood viscosity happening is a drug side effect risk I’m attempting to evaluate. Infusion drug therapy offers the potential of a better day-to-day life. Yet, the risk of a stroke or blood clots is a risk factor difficult to ignore.  A stroke would be more life changing than CVID. How does one evaluate a “possible side effect” which may never happen and the risk to one’s life and family should the unthinkable result come to fruition. If anyone has the answer, I’m listening!  
  9. Traveling away from home is no “easy peasy”. Airplane travel for many is out of the question. Traveling away from home for more than 7 days requires refrigeration of the drug to keep it viable. One must plan accordingly.
  10. When newly diagnosed the learning curve is overwhelming and challenging. CVID is a fairly rare disease. There’s not a lot of available information. Doctors and researchers don’t agree on its cause.  Some say genetics; others say environment, and others say we really don’t know. More research needs to happen.  Sadly, this most likely means more people  need to be diagnosed with the disease before answers are discovered.

cvid-awareness-be-happy_designA huge hurdle for many, once fear is conquered, appears to be getting family and friends to understand the potential seriousness of the disease. And to have family and friends who are supportive and encouraging; willing to accommodate the special needs of those with CVID.

CVID is  not the only disease which brings challenges to living life to the full. I hope you will share, in the comments below, your challenge with whatever disease you currently struggle; be it CVID, Cancer, Rheumatoid Arthritis, Lupus, Parkinson’s or others. By sharing we discover we’re not alone and gain encouragement along the way. I look forward to exploring the mental and emotional sides of coping with CVID in future blogs.

In closing, no matter what disease we’ve been diagnosed, it’s important we don’t allow the disease to define us.  We are not our disease!

More to come
Until next time,
Sandra

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Author: Sandra

I became a writer in my later years. I love blogging and sharing life with others. I speak to women's groups about the Christian life.

7 thoughts on “Living with CVID”

    1. I’m sorry. The frustration with this disease runs a full spectrum as do each individual’s symptoms and challenges. Stopped by your blog and appreciate the time and effort you are putting into information on CVID and other PI Diseases. I’m not sure if you read any of my others posts, but if you did you most likely discovered I’m a person who believes in prayer. I would love to pray for you and your challenges with CVID. Not sure you would be willing to share but if you are, “How might I pray specifically for you today?” Feel free to private message me. Again appreciate you letting me know you’re out there.

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  1. Thank you for the information it is scary stuff, I have no answers but I love you and will be praying for you and your family as this effects them also.

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  2. Have you tried to reach out (somehow) to get in contact with other CVIDers? I know you said it’s rare, but usually folks get encouragement and help from having a community of others with the same illness. In the meantime, thanks for educating the rest of us in your inner circle. You are loved, Linda

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