Pushing past illness and CVID

Two years ago I finally got a diagnosis after 25+ years of being sick. 

I’ve had a history of infections since around the age 18. I don't remember being sick as a child, I'd say more "snotty".  I always walked around with a stuffy nose.  The first symptoms of Common Variable Immune Deficiency (CVID) that I can recall were mostly gut related with ear and tonsil infections sprinkled in to keep things interesting. Symptoms included chronic IBS, churning stomach,  my digestive tract was under attack. I didn't tell anyone  until I told my mom at age 22 (when my dad was dying of lymphoma)and I thought I had stomach cancer which I admitted to my mom in a late night talk/crying session I remember having with her.

We chalked it up to me doing too much, something I've heard all my life, and the stress related dealing with my father’s process of living with lymphoma, which eventually he died of. My doctors believe it's very possible that my father had CVID as well, and it turned into Lymphoma.

Cancer, specifically Lymphoma has been connected to CVID and it's been on my mind for a long time since my father died of it. There is no way that we have to know if he had it. A Stanford doc has told me that he may be able to test his DNA post mortem but we're really not sure and I haven't gone down that path because I'm not sure it's necessary.  Read about the link between the two here.

I think what matters is that I believe he had it.

He suffered from similar ailments, ear infections and immune issues like psoriasis and more. He chose not to do chemo-therapy when he was diagnosed with cancer because I believe he was scared. See, what I've neglected to tell you is that my brother was diagnosed with testicular cancer at age 22 and was hospitalized for a year and a half when I was age 14.  My mother went with him to M.D. Anderson in Houston, Texas (where we were all born) and I stayed with my dad in California. My brother lived. Thank god. He almost didn't and it's a unique story that I started to tell in musical form but has since stalled out.


Larry Bell

My father on his 50th birthday. On this day he climbed half dome by himself to do some reflective writing on his life. This was about eight years or so before he passed away, towards the beginning of his illness when he was still strong.

My father decided not to pursue chemo therapy, mainly because I think we saw my brother’s battle, and I suspect he didn’t know if he wanted to, or even could, subject himself to the same thing.  Instead he pursued a more homeopathic track, which did allow him to survive for another 10 years.

Later in life, specifically after the birth of my son, my illness started to move into my lungs and ears and sinuses.

Chronic bronchitis, tonsillitis, and ear infections.  I married at age 24 and waited 7 years to start having children since we were young and still developing our careers and our marriage. When we we were ready to start having kids, my body started to reject pregnancies. It was a terrible time in my life, and I performed all the way through it. I've had 7 (maybe 6, one was so fast we are not even sure it would be considered valid) pregnancies and two children. I would go through it again, however, to get these two kiddos, but looking back, I finally have an explanation for what was going on. 

I was finally diagnosed with CVID after a five day hospital stay after a bout of pneumonia stuck in my lung lining.

Thanks to quick and smart thinking by my mother, a pharmacist, she asked the hospital to check my immunoglobulins. News flash a day later! I am missing all of my immunoglobulins! That means I have zero antibodies that help fight off any infections. For about a little over a year I received IVIG, an intravenous medicine that is sourced from healthy peoples’ plasma and allows me to live. I have insurance through my husband. Otherwise I'd literally be out of luck, as the medicine I receive is between $5000-$10,000 a pop depending on what you receive and how often. For about a year, I received IVIG every month for four hours in the hospital alongside the chemo patients.

I'm lucky to have insurance.

About 8 weeks ago I switched to weekly subcutaneous infusions that my husband or mom give me on Monday evenings. I do them on Mondays because this medicine is strong and knocks me out. I take a hefty dose of allergy medicine to help with the side effects of the medicine going into my skin. I put an ice pack over my tummy as I receive it so that it doesn't result in such bad welts. 

I do it on Mondays so I can take a dance class during the day, receive my treatment, be able to rest for 3/4 of the day and take another dance class at 5 pm on Tuesdays. I wear tight pants to keep  my tummy from hurting since it's sore the whole day and when I move it is sore. I hold my tummy while working out in my awesome U-jam class that I take, not teach. This class has really helped me this past year. It helps keep my mind calm. It's so much fun to be a students 2-3 times a week instead of the teacher. It allows me to think of just dance for an hour. 

IMG_0949 (1).jpg

3 injection sites

Little welts pop up, called knots and I use ice, Benadryl, and hydration to help keep them to a minimum.

Is it mental health or ego? Both I suspect.

One random mental issue I deal with on Tuesday nights is forcing myself to not stand front and center in the class on and also not to push myself beyond what I can handle. I know to a normal minded person this would be considered a small decision, but for me it's a difficult one. I often stand in front in my class because a) I'm a dance fitness teacher myself and it helps  other people in the class to have another person to look at. In addition, I work harder in class, so do other people and I'd be lying if I said it doesn't feed my performer’s ego. I talk to myself before hand and literally say "okay this workout is for your mind and your body, Molly...not to perform, or push yourself beyond your boundaries". 

Sometimes I succeed and sometimes my ego takes over.

I may be a little over-dramatic when I say I feel a sense of shame as I continued to be sick. Friends and family didn't mean to sound annoyed when I got sick but that's how my mind took it.  I'm hesitant to say that because I realize it sounds sort of silly, especially when I'm kinda asking for it?  I'm always front and center of any room, in my daily life, I'm loud, people are comfortable with me leading them, but it can get annoying. I know I've said, "jeez that chick is so dramatic, she's always sick" a few times in my life about people I know.  I definitely find anti-depressant commercials annoying to the point of wanting to re-produce them to make them mini documentaries. 

Did you catch that?

Another idea just flew by. 

Looking back, I see myself pretending not to be sick so I wouldn't be missing from events and letting people down. It started a pattern in my life that I think has royally f'd me up, mentally and physically. 

But what came first? The chicken or the egg? The failure of my immune system or my mental health issues? I don't think I'll know. My life is a constant balance of mental health, performance, illness and now medicine moving through my body and I realize that trying to master control over all things for so many years has culminated in my own personal watershed moment.

Let it rain.

If you connected with something in this post please feel free to share to anyone you think may get something out of it. My focus is on sharing, connecting, and allowing a conversation to emerge. So share away and stay connected with you and others around you who may be struggling with something in their lives.