Do You Feel Like a Burden?

Feeling like a burden is so common to those with disabilities and pain. Just know that if you have this feeling, you are not alone. I've been living with stage 4 NSCLC for almost 10 years now. A person will look at me and think, "She looks fine. She can get up and get her own soda. Why can't she change out the animal's water?" All viable questions; but here are some situations that others don't understand, that may specifically pertain to you.

I can't find pain relief

I go to the doctor for side effects such as ingrown toenails. They sometimes will be almost the actual size of the nail itself by the time I can get into a podiatrist to have it removed. It may take weeks to get in. Therefore, they tell me to take Extra Strength Tylenol. I'm not sure if anyone else has had this problem, but it can be absolutely debilitating. It's one of the many side effects that come in cycles. I'm not able to take NSAIDS, only narcotic pain medication. No Alleve, Aspirin, etc. but, since I've had lung cancer for approximately 10 years, my PCP has begun treating me like a drug seeker.

Near the beginning, he said she could give me 30 pain medications every 90 days. Of course, she said this behind closed doors. Therefore, when I went in, which was only when I was in pain, she told me I needed to go to a pain management clinic.

This is also the same doctor that saw me over and over and called my tumor in my brain a sinus infection and referred me to an ENT. She also claimed the MRSA I developed "allergies". This led me to find a pain medication that wasn't mine and accidentally overdose on fentanyl because I had no relief. The ER doctor that treated me was appalled. I had so many abscesses I was unable to sit anymore. So, I would just lay down on my side until I couldn't take the pain. I just never had a doctor take my pain seriously and resolve it.

I had to start advocating for myself

When I don't get up to get that soda/water and ask you to do it, I swear I'm not being lazy.  I want so much to have the energy and lack of pain I once had. But, that is the past no and it's not going to change unless I do something about it. I've come to realize I can't trust many doctors, especially where I live. I have at least 4 doctors that I saw at the ER and emergency clinic for headaches and not one requested an MRI. I went to Atlanta over Thanksgiving 2012 and that is the first thing they did, hence finding the tumor that caused my brain to shift.

No wonder I was having headaches. As of now, I've been dealing with nail issues since Christmas. Ingrown nails will not stop haunting me and all I can do is sit in pain until I get into the podiatrist again (who will not prescribe narcotics) I had my oncologist refer me to Palliative Care. I know that sounds horrible, but it's something I should have done a long time ago.

The pain becomes a burden

It was downright insulting for my PCP to tell me to go to pain management. She knew I never had a specific pain but they would be side effects of my targeted therapy. And yes, every time I ask anyone to do anything for me, I feel like a burden.  I know my baby girl doesn't really get it so when she huffs and roll my eyes, I just smile. It's comical to me sometimes.  I know one day she will understand but she is me made over at that age.

But, to the adults, I can't do much for work.  Help me out more.  Some days I don't feel like getting out of bed because of nausea, to walk on my foot, extreme fatigue where I want to sleep all day, dry skin that literally puts me in tears.  I can't even lift my right arm above my head anymore.

It's harder by the day

Ten years.  You would think I'm a warrior.  But ten years in, it's harder by the day.  I've never wanted to depend on anyone, especially those who make me feel like a burden when I need help.  Mom, I'm so grateful that you have been by my side the entire time.  I'm so lucky to have you.  And when my time drawls near, I can only pray you will no longer be around to see it.  And I will see you and dad on the other side.