CVID Updates: Lifestyle Modifications, Support, and Sharing

I’ve been posting quite a bit lately about my journey with the chronic illness CVID. It’s been a pretty rough few months, but I am determined to get to the bottom of WHY they’ve been so difficult and do whatever I can to start feeling better – physically, mentally, and emotionally.

LIFESTYLE MODIFICATIONS

Crossfit, running, and generally working out have become a huge part of my life for the past eight years. Embracing physical fitness has changed my body, my mind, and opened me up to a whole new group of friends and life experiences. Working out is what keeps me mentally sane and physically strong – in fact, doctors credit my good shape for what kept me alive during my Sepsis scare.

But for the past few months, my fatigue has been so intense that I worry the tough workouts I do with my bursts of energy are just making things worse. The thought of seriously tempering my workouts scares me – I need them for my mental health (mention yoga and I’ll throat punch you), I need them to keep my blood sugar and other weight-related health issues in check, and I need them, because, forgive me, I am vain. I am completely accepting of and see the beauty in women of all sizes. But, when it comes to myself, I can’t get over the compulsion to remain as thin as I can reasonably be with two children and trash genetics.

But I know that something has to give. No more races. No more competing. No more pushing myself to keep up with the class or use heavier weights. I will modify, scale, and slow down as much as I need to. I will take shorter, slower runs. I need to make peace with listening to my body.

I’ve also become hyper aware of the spaces that could be highly triggering to my weak immune system – and sadly, the gym I love so much is probably the worst of them. I think I’ll do better there in the spring and summer when the windows are open and people are generally less sick. But, during the winter, it is a hot enclosed garage full of people hacking and sneezing onto shared equipment. If my symptoms improve after this winter, I’ll need to seriously rethink the gym next fall, and consider taking my membership money and buying an elliptical machine or something. That sucks because the gym is usually also the only time I actually get out into the world and socialize. But it’s a small lifestyle change I may have to consider.

SUPPORT

While I have been vocal on my own platforms about my illness, I haven’t been as proactive as I should about finding more emotional support. I’m extremely lucky to have a husband who does EVERYTHING and a few other amazing people in my life. I have parents who love me, but they aren’t always able to be present, especially as they don’t live nearby. And, if I’m being honest, this kind of caretaking just isn’t their jam.

I’m hesitant to read too closely on the online support groups. While it can be helpful at times, it can also be depressing – people venting about the physical, emotional, and financial stress of chronic illness and listing the possibilities of other autoimmune diseases we may have. Lately, due to chronic fatigue and occasional tingling or pain in my hands and feet, I’m convinced I either have fibromyalgia, rheumatoid arthritis, or chronic fatigue syndrome – all difficult to diagnose with a weird immune system and not super treatable at that.

I follow the #CVID hashtag on Instagram, which is a mix of inspirational quotes, people climbing Mt. Everest, and people in absolute misery. It’s a very mixed bag of feelings.

After learning that quite a few local parents I know suffer from chronic illness, disabilities, or cancer – many of whom chose to be more quiet about their struggles – I decided to start a small, private online support group for local parents dealing with health issues. So far, it has been a wonderful place to share, vent, offer local resources, and legitimately help each other.

KNOWLEDGE

Participating in these parent support groups also highlighted for me an issue that the medical community doesn’t really talk about: how pregnancy and childbirth often trigger autoimmune disease. My disease is immune – not autoimmune – though it often comes with a host of autoimmune issues. But what was likely a genetic mutation presented itself during my second pregnancy, when I started to experience infections like never before – painful ear infections that made me lose partial hearing, sinus infections that wouldn’t clear with antibiotics, bizarre bouts of laryngitis.

I assumed that after pregnancy I’d start to feel better, but when I started getting frequent bouts of debilitating fatigue, I chalked it up to motherhood and nursing. Long story short: it was the start of my CVID. Here is the major study that was done a few years back that explains how women’s bodies can experience disease onset from pregnancy.

I’m also learning more about how CVID symptoms manifest for others and what that might mean for my own treatment. It was interesting to learn I was not the only one who was really suffering this winter. We imagine its a combination of an abundance of winter viruses our bodies are trying to fight off, and the lack of sunlight, fresh air, and warmth. I’m not moving to a tropical climate and I can’t live in a bubble. So I’ll be interested to see if my symptoms do improve as we approach spring, and, if so, what precautions I can take to survive future winters better.

ALL THE SUPPLEMENTS AND THINGS

I take a LOT of supplements to try to help me feel better. I have no idea of any of these things are actually helping me, but I don’t think they can hurt. Here is what is in my daily regimen. (Disclosure: I am not a doctor, this is not medical advice, talk to YOUR doctor before taking anything, and some of these are affiliate links.)

  • A good organic women’s multivitamin.
  • High potency Vitamin D
  • B-12 spray, which is supposed to help with energy and processing Vitamin D
  • Branched Chain Amino Acids for muscle tone. I have a very popular post about when I tried Advocare, and mentioned that there are cheaper BCAA products on the market. But I’ve ended up actually preferring the Advocare catalyst brand after all.
  • I use a sinus rinse everyday, and I actually prefer this squeeze bottle kind. Definitely use distilled water. My immunologist also had me add some prescription Budesonide liquid to my sinus rinse to help clear inflammation.
  • If I’m feeling like I am coming down with something or have an infection, I add extra Vitamin C as well a product called Candibactin which is an amazing herbal “antibiotic” great for respiratory function.
  • I usually drink a protein shake after my workout, which consists of Orgain chocolate protein powder (by far my favorite, especially as I have a random Whey protein allergy); Collagen Powder, which is meant to help with joints (and wrinkles!); and Moringa leaf powder, which I received as a free sample but dig both the taste and the promise of anything that claims it will help my immune system.

Of course, I do my Hyqvia subcutaneous immunoglobulin infusions monthly, and with that, a use host of other products to keep me hydrated and ease additional symptoms like headaches and injection site itching.

SHARING

Certainly, this one isn’t new for me – I’ve been sharing every step of my journey. I do this partly because it feels cathartic and helps me process my experience, but also in hopes of connecting with others who want to know they are not alone in their struggles with similar issues. I’ve connected with people around the world who have recovered from Sepsis, manage CVID, parent with chronic illness, and have fought battles with insurance companies over treatment coverage. I can help amplify their voices, and they help amplify mine.

So for everyone who is running that triathlon despite their illness and everyone who struggled just to shower today – I’m with you. And I’ll keep you posted. ❤️🥄


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