Patient Profile - Amanda Martin

Patient Interview with Amanda Martin

Hello, friends! We’re happy to begin our series of patient profiles. We’ll be talking to patients from all walks of life at every stage of illness. Our first interview is with Amanda Martin, a CVID patient who was diagnosed in 2008. Welcome, Amanda!

When were you diagnosed? August 2008

Are you currently on treatment? Yes, I receive IVIG every 3 weeks.

What’s your best day like? My best day is when I'm coping with the pain and have the energy to take my daughter to the zoo with my husband. She loves seeing the animals and being active is exhilarating. I also really enjoy spending time with other veteran caregivers and their families that I've met through Wounded Warrior Project. The Independence Program has been instrumental in allowing my husband the ability to stay in our home with the support both of us need to make him as independent as possible.

What’s your worst day like? My worst days are when I struggle to get out of bed either from illness or pain. I can usually muddle through, especially when my husband has an appointment at the VA, but some days even that is too much. Then it's Netflix, a comfy spot, and sometimes delivery pizza for my family. I also reach out to my IDF peer mentor for support. She's a constant source of comfort and hope for me.

What are your go-to comfort items when you’re sick? M y heated boots and my pillows. I also spray lavender on my pillow and use a heating pad on my sinuses - no matter what illness I have, they're always inflamed!

What do you feel most passionate about? I feel most passionate about advocacy. I spend a lot of time advocating for my husband at the VA and in public and I also spend some time advocating for our daughter and her needs. Most of my free time is spent educating myself on what I should know or what method might work better to get things done. I also try to be a resource for people that are either new to veteran caregiving or who are combining veteran caregiving with a chronic illness. I haven't met anyone else who is a veteran caregiver and also has a primary immune disorder, but I spend a lot of time thinking about the long-term scenarios. My family lives with my parents so that I have constant help and support. We are also moving to a new area soon and I'm making deliberate choices for our next house so it's better suited to my health as well as my husband’s needs.

What’s your biggest pet peeve? I have two. People who consider it a badge of honor or a point of pride to be sick and out and about and people that harass my husband and myself about having a handicapped license plate. Invisible disabilities are so difficult for people to understand. 

Who are your “people”? My people are the wonderful people I've met through IDF and Facebook as well as a few veteran caregivers that really get me, as well as my infusion nurse and my parents. It really does take a village to make my house run as well as it does.

What’s the one thing you wish your doctors knew about you? That I can take a lot but sometimes I shouldn't have to do so. I was in pain for a long time before I asked about a prescription NSAID. Now I wish I hadn't waited so long because it made such a difference in my day to day routines. I've even lost some weight because I'm not consciously avoiding my stairs.

If you could share any advice with someone newly diagnosed, what would it be? Ask questions and make a plan, because this disease has a lot of moving parts. Never be afraid to ask if something is covered by insurance and always assume there's a solution to your need or problem. The Immune Deficiency Foundation is a great resource. Lastly, advocate for yourself even if it's not your strong suit. I'm a lot less shy than I was before diagnosis and that's a good thing!

Thank you, Amanda, for sharing a part of your journey with us. If you’d like to connect with Amanda, or would like to share your story, please contact us or connect with us through Facebook .