10 Ways – How CVID Effects My Life

An invisible illness called CVID effects my life. If it hasn’t reached your family, your friends, your “circle” yet, it’s coming.

After attending this year’s Kansas City Immune Deficiency Foundation conference, I left thinking that we are just at the tip of the iceberg.

Many people, and that includes medical professionals, may not have heard of CVID…yet. However, as researchers are discovering more about the immune system and genetics, I predict more people will be accurately diagnosed earlier with Primary Immunodeficiencies.

The epidemic has already reached me and my family. I was finally diagnosed with CVID and began IVIG treatments November 2017. My 13-year-old son, Jackson, was diagnosed 4 weeks ago with CVID. My 9-year-old son, Jace, was diagnosed with IgG Subclass Deficiency in December 2018.

This is how CVID effects my life:

1. I never know when I wake up if I can attend the appointments or events I have scheduled that day.

If I’m having a “low” day, it might mean I can’t get out of bed except to go to the bathroom. It also might mean I feel aches and pains in my joints all over my body, I’m running a fever, I’m full-blown sick, I’m fatigued because I did too much the day before or because of my Chronic Fatigue, I’m having pelvic pain from my Interstitial Cystitis, full-body pain from my Fibromyalgia, I’m having side-effects from my IVIG treatments or other medicines…and the list goes on…and on.

2. I’ve lost some friends.

CVID has turned me into a “flaker”. I often have to cancel outings and time with friends because I am sick or not feeling well. After a while, some friends just stop asking. The good ones though, they stick around!

3. I had to leave my job of 10 years last year and can’t work.

Like I mentioned above, I wake up never knowing if I will be able to function that day. Due to the body damage and pain CVID has caused, I can’t sit for long, stand for long, walk for long, type for long, or do anything for the length of time it would take to complete any decent amount of work. My blog posts are typed in just a few minutes at a time and often with help from family “scribes” I’ve coerced into helping me!  I depend on a LOT of other medications to make it through my day and they have side effects like brain fog, constipation, diarrhea, sleepiness, dizziness, nausea, dry mouth and eyes, anxiety, depression…and the list goes on…and on.

4. I’ve missed important family events and milestones.

My niece graduated from college this year and my family celebrated her success! Unfortunately, I couldn’t be there because I had my IVIG infusion earlier that day and was experiencing side effects. My husband sent me a recording of her opening her gifts that I was so looking forward to giving her though. So, at least I got to see that.

5. Our financial situation is not what it once was.

Sure, my husband and I have hit some rough patches like every other couple out there but with the progressive and then severe onset of my CVID I could no longer manage our finances closely as I once did. It was my job since we had gotten married because I was simply better at it. (He’s better at cooking!) CVID has caused some major financial boo-boos for us because it’s hard to manage your finances when all you can manage is laying in bed in a dark room most of the time.

6. My life is scheduled around the IVIG infusions I get every three weeks.

The most important appointments on my calendar are my IVIG infusions every three weeks because they keep me from getting sick and keep me alive! Those are scheduled first, every three weeks, no matter what else is on my family’s calendar for that day. If there is something, I miss it to receive my four to five hour infusion complete with side-effects for the rest of that day and the next.

7. I’ve gained weight.

Because I am on prednisone to help manage the autoimmune disorders that accompany my CVID, I’ve gained an unhealthy amount of weight in a short period of time. In about six months I’ve gone from about 135 lbs (I’m 5’8″ tall and small framed so 140 lbs is usually the weight at which I feel best) to 175 lbs. Talk about a blow to my self-esteem which has taken a fair share of beatings lately due to CVID. I had to buy some new clothes which wasn’t in the budget and I feel incredibly uncomfortable in them anyway.

8. My life goals have changed dramatically.

I now know because of CVID why I was more sick as a child, had less energy than the other kids, and always seemed to have to push myself to exhaustion to succeed. I also now know that because of CVID, some of the goals for my life I once had are no longer realistic. I know quotes on Pinterest encourage those with chronic illness to never stop reaching for your dreams, but let’s get real here, my dreams have to change. I can no longer bring home the bacon, fry it up, and be the super-mom I felt I once was. I am too sick. So, I have to prioritize and being the best mom I can be with CVID wins.

9. I’ve had to learn a new normal.

Have you ever heard of the Spoon Theory? If not, read the Spoon Theory so you can better manage your energy and explain your illness to your loved ones. For me, I have a Type A brain in a CVID body! My body can not keep up anymore so I have to count the spoons I’m given everyday and use them wisely.

10. My relationship with my husband and children has suffered.

Let’s face it. Physically, as you’ve read above, CVID has limited the number of life experiences I can share with my children and husband. Mentally, I am inside my own head–a lot! I am constantly thinking of and researching ways I can improve my energy and my overall health. I am sorting through all of the changes going on in my life in my mind and trying to learn to cope with these in a healthy way. This takes a lot of mental and physical energy and honestly is sometimes detrimental to my relationships with my family. It’s hard for me to just kick back and have fun because of anxiety over my CVID, anxiety over my children having Primary Immune Deficiencies also, anxiety over getting the everyday stuff of life done…and so on and on and on.

Stay strong my Zebra friends.


3 thoughts on “10 Ways – How CVID Effects My Life”

  1. Hi. I am newly diagnosed with CVID and am waiting to find out what the dr is going to do. But in the meantime I am suffering. I can barely make it through a work day as I am exhausted beyond words and I ache all over. I’m hoping you could answer a question that I cannot seem to get an answer to. Do you feel better with ivig? I am wondering if it just PREVENTS infection or if you actually FEEL better. I would be ever so grateful if you could answer that for me. Ty so much!!!

    1. Oh, oh, oh. I know exactly how you feel. I’m so sorry it’s taken me a while to answer. I’ve been dealing with some CVID fatigue still myself (along with other related issues). Well, the short answer is YES! Yes, you will feel less fatigued. You will feel less fatigued a little bit with your first infusion. How can I describe it…it feels like you’ve been in a dark closet searching for your fav shirt for a very, very long time. Then, after the side effects of your first infusion wear off, it feels like the closet light that’s been there all along is finally working a bit so you feel a sense of relief and hope and yes, less fatigue. However, it took me about 5 months of receiving infusions every three weeks before I really felt much less fatigued. I was told by my infusion nurses that it takes several infusions for the missing antibody levels to rise and stay up above the lowest tested threshold. Then, this is something I’m still dealing with is there is something called “the wear-off effect.” For a while I had switched to one infusion every four weeks, but by the third week I was sooooooooo tired! What happens is you get your infusion and you feel great for a while, then you feel less great great for a while, then you feel like shit again, and then it’s infusion time again thankfully. This was happening to me so I decided to go back to getting my infusions every three weeks, which sucks, ’cause I hate them!

      You will also have less fatigue because your immune system is not having to work so hard to fight off infections it couldn’t fight off before! (My theory and I’m obviously not a doctor!) The pain and aching you feel will get better over time. Mine has never completely gone away though. There are some days still when I can’t get out of bed because of the pain, aching and fatigue; but there are also more of what I call my “better” days.

      Your body is feeling this way because it has lived as long as it can with an immune system that is missing very important parts. It is tired. It is sick. You are lucky you have been diagnosed because your body may not have been able to make it much longer.

      You will now start to feel better, to heal, to survive, to grieve, to soul-search, to fear, to live…I wish I could say the infusions would solve all of your problems, and they might if you are one of the lucky ones, but they might not. After more than a year of infusions, I still believed I should have been feeling better so I had to start a new journey…a journey to discover, hopefully fix and live fully with all my other CVID-caused health issues.

      Listen, you write me anytime-directly at susanalynne@cvidiva.com

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