I am starting a new series where members of the chronically ill community have a chance to interview their parents, siblings, or significant other about how their illnesses may have impacted the person they interview. So I thought there was no better way to kick off a new series than to sit down with my own Mom!!! So below you will see the interview I did with my Mom and advocate.
Be on the lookout for future interviews with other members of the chronic illness community.
Q1. What was your first thought when I was diagnosed with Lupus?!?
- I was sad. We had known for years that there was something wrong with you, but no one had ever taken the time to really figure out what it was. It took 10 years from what we considered your first flare to the time we finally got your diagnosis. At least then we know what we were dealing with.
Q2. Did you believe the diagnosis, if not why?
- I did believe the diagnosis. In fact, as you know we had suspected it was Lupus for a while, but it took several years for it to show up on a blood test blood test. Or to find a doctor who would actually consider that as a possibility.
Q3. How hard has it been for you to see me go through so much health wise the last 6 years?
- It is very hard to know that you are in pain and not be able to help. I’ve prayed so many times for God to give me Lupus and let you have your normal life back. I would trade places with you in a heartbeat.
Q4. Did you even think twice about letting me move in with you and the family or was it just what had to be done?
- I didn’t have second thoughts at all about you moving back home. It made it easier to take care of you, especially with the migraines.
Q5. How does it feel that you have become my advocate? You have to be the one to speak for me when I can’t. Does that make you nervous?
- I didn’t have a choice in being your advocate. Amber has hemiplegic migraines which often means she can’t speak or her speech is very slurred during her attacks. And one side of her body goes numb. The first time it happened the ER called a stroke protocol because they thought she was having a stroke. The medical staff tend to not listen when you go to the ER with repeated migraines. I’ve had to get “tough” and show them my “mama bear” side many times. So frustrating when medical staff doesn’t listen to the patient.
Q6. Which of my conditions do you find that you struggle with dealing with the most? And why?
- The migraines. When you have a hemiplegic migraine I have to remind myself that you aren’t thinking clearly. You once saw a man jogging on the way to the ER and said “What is that man running from!?!?” I said “He’s jogging Amber.” I laughed so hard I cried. Sometimes you need to laugh.
Q7. What has been the most difficult aspect of my being sick for you to see me deal with ( losing my job, losing friends etc)
- The most difficult aspect of Lupus has been two things.
The first is multi-faceted. It's been hard to see you not being able to work. And your loss of independence. As many know, last summer you totaled your car when you had a seizure and that’s made life hard. You didn’t have a car to drive(and couldn’t drive per your dr for a year). So that has taken away a lot of your independence. And due you not being able to drive you really haven't been able to work an traditional job. Especially not a job in nursing. So your loss of independence has contributed to your not being able to work.
The other big one is watching you lose your friends. It’s hard for people to understand that you are to exhausted or in too much pain to get out of bed. People need to spend a day in your shoes to truly understand lupus and the other illnesses that you deal with on a daily basis.
Q8. If there was something you could tell people about me that they might not know, what would it be??
- That you have become an big advocate for lupus. You started a group for lupus and other chronic illnesses on Facebook that now has over 600 members. They also should know that you have a blog, you do live feeds talking about lupus and how to live with it. You have helped thousands of people. I couldn’t be more proud!!
I want to thank my mom for being part of this series. I really appreciate her more than she knows. Not just for being a part of this blog series but also for supporting me through this season in life and becoming such a great advocate for me.
I hope you all enjoy this series and there are more to come!