Back to our interview with Mary! Miss the first part? Click here.

Mary:- “I think education is power and the more you know about your disease process the more prepared physically, mentally and financially. Financially it’s a huge imposition; to retire early… it took me two years to get my social security disability approved because it wasn’t common. I didn’t receive compassion and immediate help, we had to go through appeals. It’s a long process. Treatment is expensive. Luckily Medicare pays for my infusions. I use Accredo who ships overnight, they’ve been wonderful and a great way to research information about the immunoglobulin, I recommend talking with a specialty pharmacist.

It’s not fun. I feel badly for people who have this, especially children. Children share germs, it’s hard to have a normal life with an immunodeficiency. Kids can’t really sequester themselves away from sick people, it’s very sad.”

Patient Worthy:-“I bet it must have been particularly hard for you as well, working in a hospital.”

Mary:- “Yes but it was a good choice of mine to work in oncology because they’re immune compromised too so there can’t be sick people there, it was the grace of God but still, every couple months I was sick. I’m hoping long term that immunoglobulin will help and I’m seeing a naturopath to add some healthy eating and lifestyle habits.

When I was working as a nurse… your immunizations have to be current when you’re a healthcare provide, I would frequently get sick after injections, that helped with the diagnosis. Psycho-socially I think these autoimmune disorders are really hard to deal with. I hadn’t realized on the other side as working as a nurse, I didn’t really understand how sick and worn out and despondent one can feel when they’re that sick. It was a big eye opener for me and if I was ever well enough to go back to work I think it would help me to be a better provider and nurse to understand where they’re coming from. Because it’s hard, I’m trying to be the same person I was before it really took off, because I can’t do the same things as before with my body like play with my kids or workout, it’s really frustrating.”

Patient Worthy:-“Are you part of any advocacy groups?”

Mary:- “No, I don’t really know how to go about it, really, I think the more we talk about it, really. I think the more we talk about it and promote wellness and testing for immune deficiency maybe it will help more people. So maybe when people come in with a bunch of infections and they’ll think to see if these kids have deficiencies. It’s seems odd it’s so difficult to diagnose when it can be tested just with a blood test, it’s frustrating.”

Patient Worthy:- “ What do you think is your biggest worry regarding CVID?”

Mary:- “Becoming crippled and becoming a burden on my family. I don’t want them to have to take care of me, my daughters are young I’m sure they want to live their life. Something that concern me with my children and grandchildren, is I don’t know what the chances of them developing the same thing I have and will their providers know enough to investigate to know what’s going on with them if they do develop something like this.”

Patient Worthy:-“Have you had to explain your condition to a health care worker who has never heard of it?”

Mary:- “Yes. A physician’s assistant in an urgent care had never heard of it and had to look it up. The physician had heard of it but had never seen a patient with it. “

A funny experience she recalled was with one of her friend’s misinterpreting what CVID stood for. Her friend thought it stood for cardiovascular infectious disease.
Patient Worthy:- “ What is some advice you would give someone who was recently diagnosed?”

Mary:- “I would tell them to make sure they take care of themselves first because it’s so hard. Being a woman and especially a mom I feel like I have to take care of everybody else before myself, and with CVID taking care of yourself, eating well and trying to get exercise is so important. I’d also tell them to be honest with people, tell them not to come over if they’re sick or ask them to warn you if you’re going over to their house if their child is sick. Be your own advocate, it’s ok to say ‘I can’t come over you have a cold’ or, ‘you can’t come over’ without feeling rude or impolite.”

Patient Worthy:- “That’s good advice, patients have enough to deal with already without having to feel guilty over something they can’t control.”

Mary:- “ Right. You shouldn’t feel guilty, though I do personally. So I don’t know how to get passed that. I think that if at the time of diagnosis it would be great for patients to be able to talk to other people with the diagnosis, like ‘ hey what do you know? How do you feel?’ I feel better when I speak with people who have RA but I haven’t met anyone who has CVID.”

Patient Worthy:-“What do you most hope for in the future?”

Mary:- “For there not to be any more diseases. But for myself personally I want to be infection free as long as I can and continue to live my life the way I would like to, within boundaries of not stupid stuff …like not going into a room full of people with TB. Just to be living my life even if taking this medicine I can go out, I just want to feel well or just know what it feels like to not be sick. To wake up and have a whole day where nothing is bothering me.

I feel like I’m in this abyss and I can’t get out of it. It’s a weird place to be, not like depression, but like you become all consumed in this illness continuum and you can’t get out of it. It sucks all your energy out and it’s like you can’t see any way out, but then I’ll wake up the next day and I won’t feel that way and it’s weird to have these roller coasters where you feel so horrible but 12 hours later you’re ok. There’s no panning.

My husband planned a vacation and I’m really hoping that I feel ok but it’s not like I can plan if I’m going to be sick or not, so we have plane tickets, reservations but I’m not going to know if I’m going to be sick I’m sure it’s hard for my family as well it such a weird reality to feel on the brink of death and the next day feel fine. It’s almost like a cruel joke that your body plays on you. I’ve thought about this a lot and I think it’s almost like your body trying to get back at you for something, I’m kidding, it comes on quickly and subsides quickly… but it never really subsides it’s kinda fascinating in a philosophical way.

I think it would be easier to deal with if you had a new normal with consistency, if I could get used to it, but I have peaks and valleys so I don’t have a normal anymore.

The days that I do feel good I feel so thankful and happy and then I overdo it and get sick the next day. I’m trying to refine that and not try to get everything done. It makes me look at what’s really important, a spotless house vs just making sure the dishes are done and the bathrooms are clean. I don’t need to worry about every little detail, I’m trying to take a life a little more slowly.

I garden fresh vegetables, with gloves so I don’t get sick from dirt. Even days I don’t feel well I have a purpose, I have to go water my zucchinis and tomatoes and it makes me feel like I’ve contributed to my families well-being and my health. It’s a hobby and I think that’s important for any chronic illness patient, to have something that makes you feel like you contribute and helps yourself esteem up. Something you can do in your new state, and I now I have 9ft tall cherry tomatoes.”