Interview with an Autoimmune Infusion Nurse (my mom!)

Interview with Autoimmune Infusion Nurse

I’m really excited to share this interview with you today. When I first started doing interviews on my blog, this person immediately popped into my head as someone that would be extremely insightful for you! I’m so happy to tell you this person is my mom!

My mom is a nurse (the best in my opinion!) and has worked with patients with autoimmune diseases for many years. Needless to say, when I was diagnosed with celiac disease it hit quite close to home for her. I’ve shared this before, but when I was really sick and doctors said it was in my head, my mom didn’t take that as an answer.  She found the best specialists around, came to all my appointments and asked them all the right questions until we figured out what was wrong!

I love that Nurse Appreciation Week always falls around Mother’s Day because I know my mom is like a second mom to all her patients! She’s loving and compassionate, and always gives a shoulder to cry on. But, she’s  also a believer in tough love and will be the first to tell you to snap out of a pity party. She’s a strong advocate in the power of positivity and will always tell you that fear is not an option.

She has so much insight to offer, that I’m so happy to share her with you today!

Tell me about your career as a nurse and what do in your current role?

I’ve been a nurse for over 38 years. I began my career as an OR nurse which I did for a number of years. I eventually moved into a management role in an Outpatient Surgery Center. After that I spent some time in allergy immunology and for the past ten years I work as an autoimmune disease infusion nurse.

What was it like working with autoimmune patients and then having your daughter (me) diagnosed with celiac?

To be honest it was very hard at the beginning since the medical community didn’t seem to know much about the illness.  I took it upon myself to learn and educate myself as much as possible about celiac and would stay up all night researching because I was frustrated that a lot of our questions were going unanswered. I had no idea of the intensity of celiac at first and, like so many people, thought that simply eliminating bread and pasta would solve your problem. It didn’t take long to  realize that gluten was literally in everything. Having my own daughter diagnosed brought the issue closer to home and made me even more determined than ever to find answers for you.

Is it common for you to see patients struggling emotionally regarding their illness? If so what advice do you give them?

It is very common for me to see patients struggle because a chronic illness is ongoing and, as of today, there is no cure. The best we can do is to manage and maintain the illness. There are tremendous emotional ups and downs with chronic autoimmune diseases and my biggest advice, as I tell you, is to remain positive, manage stress through exercise, meditation, faith, get enough sleep and eat well. Putting all that together to create an overall wellness lifestyle. I’m a firm believer in the power of positivity. I alway tell my patients it’s okay to have bad days and feel sad, but don’t dwell on those and feel sorry for yourself. Focus on all the great things in your life and always know there are people out there who have it worse.

Autoimmune diseases are tricky in the sense of sometimes they fall into a gray area, what do you say to people/patients that are frustrated with western medicine?

Although I was trained in traditional Western medicine I’m also a firm believer in exploring other options that may fall outside of traditional medicine. As the daughter of  immigrant parents, who brought with them some old-world folk medicine which takes a more holistic approach to wellness, I am not opposed to practicing some of these ancient remedies, especially as they relate to diet, clean eating and spirituality. However, sometimes lifestyle changes aren’t enough to control your illness and you need medicine (not the case with celiac since there currently is no medicine for it) and that’s okay. Don’t beat yourself up about it and certainly don’t compare yourself to others because what works for one person may not work for you. The most important thing is to control your illness and live a happy, fulfilled  life.

What’s your opinion regarding diet/lifestyle changes?

I think that eating healthy is a big part of your well-being. My grandma used to say  “you are what you eat”. I advise to try and stay away from processed food, if you don’t know what the ingredients on a box mean then why are we eating them? I also advise my patients to adopt a diet of fresh vegetables, fruit, poultry fish, etc.  Taking walks, spending time outdoors, being around positive people and having a support system will also help the patients’ emotional status.

What advice do you have for family members that are having a hard time?

As with any illness, it becomes everybody’s illness and it’s very important to understand how the entire family can be affected emotionally and even financially. It can be nearly as difficult for them to cope with the illness, so it’s important to stay positive, be supportive and try to educate yourself to better understand the situation. As with so many autoimmune diseases, the family needs to understand that sometimes just because the patient may look fine it doesn’t mean they are.

Going off the previous question, autoimmune diseases impact family members as well as the person living with it, what would you like patients to know about how it impacts their family?

Once the patient is diagnosed it impacts everybody. Being a chronic illness, until we find a cure, it doesn’t go away. It’s a long road ahead and people need to prepare themselves. Many patients and family members suffer from depression so having a positive support system and trying to educate your family is critical. I tell my patients, sometimes it’s just as hard for loved ones emotionally as it is for you. Often times, they don’t know how they can help and just like you are scared too.

In your 38 years of being a nurse, how far has medicine come as far as helping those with autoimmune illness and what’s your hope for the future?

Everyday there are advancements made in medicine. In my career I’ve seen such tremendous strides made in treatment. Illnesses that were considered terminal not long ago are now managed routinely allowing the patient to live a nearly normal life. As I’ve said previously, I’m a firm believer in a total wellness approach and lifestyle. Medicine, diet, exercise, a positive mental attitude and spirituality are all part of the overall wellness equation. I hope we continue to make strides for treatments and hopefully one day a cure for autoimmune diseases.

A big thank you to my sweet mom for taking the time for this interview!! My hope is that even though at times you may be frustrated with the medical community (I know I sure get that way from time to time), you know that there are some really amazing medical professionals that truly are patient advocates!

Don’t forget to check out my other interviews:

A Husband’s Perspective: What it’s like to be Married to Someone with Celiac

A Mother’s Perspective: What it’s like Raising a Child with Celiac

Interview with a Gluten Free Chef

Overcoming a Chronic Illness: an Entrepreneur’s Journey

Interview with the Nima Sensor Creators

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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