Tag #chronicpain

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Invisible Illness Combo with A Side of Wheelchair

Warrior Megsie 1 Comment

It’s tough having an invisible illness while looking relatively young. That old saying, “Don’t judge a book by its cover” is so true. I don’t look like someone who would have a permanent handicap sign. I don’t look like someone who sometimes needs a cane to walk from the car to the store. I most certainly don’t like someone who needs wheelchair assistance at the airport.

Well, for the first time in my life, I requested wheelchair assistance for my flight to and from NYC last week. I didn’t want to admit that I needed help. I knew I would get looks. I also knew I would possibly not be believed. So, when the older guy came over to the ticket counter with the wheelchair, he completely overlooks me and asks the ticket agent who requested the wheelchair. I had even gestured that it’s me, but he asked the ticket agent again who requested it. He was beyond rude. If it hadn’t been 5am I would’ve immediately complained but didn’t want to expend any of my precious little energy going nuclear on this guy.

All was made better when I arrived at LaGuardia airport and had the nicest woman waiting for me with the wheelchair as soon as I walked; okay, slightly hobbled, off the plane. I had told her about my unpleasant experience at the Atlanta airport and she told me to not worry now because I was in good hands. Not only did she wheel me all the way to baggage claim, but she also wheeled me all the way to the cab and also handed my luggage to the cab driver. Now that was star wheelchair treatment.

While I felt okay enough on the flight back to Atlanta, it was a different story once the plane landed. It was a full flight with not much room to stretch my legs. This time it was a younger guy waiting for me with a wheelchair as I not only hobbled but stumbled off the plane because I was in excruciating pain all over my body. The best way to describe fibromyalgia pain is a radiating burning feeling that is felt from head to toe with a big ‘ole headache as the cherry on top. This young man was fantastic! He was pleasant, energetic, and so thoughtful the entire ride to baggage claim. Then he wheeled me all the way up to the MARTA (name of our Atlanta trains) gate, so all I had to do was get up and walk right through it and up the escalator to the platform. Once again, I received star wheelchair treatment.

Of course, as I was driving home, I wondered if I’ll ever feel safe in this body? Will I ever feel strong again? Will it ever not hurt to the point of pushing me to tears from frustration, anger, and pain because I have to deal with this bullshit 24/7? I no longer remember what it feels like to not be in excruciating, burning pain.

So, it’s time to officially reconsider going the medical marijuana route. My primary’s PA actually validated my feelings and has diagnosed me with intractable pain. I’ll write more about this diagnosis next time. She referred me to another doctor who specializes in prescribing medical marijuana. I’ve tried the CBD/THC drops in the past, and they didn’t help with my pain at all. Here’s hoping I find the right method of medical marijuana that will help minimize the pain and not just make me drowsy.

This life on the cancer train often sucks and wish there was a final destination to be able to rest and recover. A girl can dream, right?

Until next time,

Warrior Megsie

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You Never Forget The Cancer Call

Warrior Megsie 5 Comments

I’ve been struggling with writing lately. It’s not because I have nothing to say or am uninspired. It’s because I have way too much to say and struggling to get my thoughts written down in a cohesive way. The perfectionist in me doesn’t want to write something awful, yet I need to release some of what has been on my mind lately.

My six-year anniversary of getting the cancer call was on Tuesday, September 14th. I woke up that morning with mixed emotions. It’s one of those memories that will never fade. The flashbacks are clear and packed with emotion. I was working at iHeart Media sitting in my cubicle on 9/14/15. I’d had the biopsy at 4pm on 9/11/15 which fell on Friday that year and was told it would take 48-72 hours to receive the results. I’m always aware of the time because of all my years working in media and making sure the commercials were the correct spot length. I remember looking at my phone when it rang at 3:05pm and not recognizing the number but knowing in my gut to answer.

“Megan-Claire, you have Invasive Lobular Breast Cancer. We don’t know the stage yet. You need to get a pen and paper and take some notes because time is of the essence.”

The entire trajectory of my life changed in an instant. Yes, I’m still alive and “survived,”, but many other warriors I’ve crossed paths with during these six years have died. Why am I still here and they aren’t? They had husbands or wives and children. I don’t. Survivor’s guilt is real. It’s important for people to not negate these feelings because the guilt is just as crushing as the loss of friends. 

I miss them.

I think of their families.

I wish I could’ve taken their place.

So yes, I’m still here but not physically or mentally the same. I’m chronically ill thanks to fibromyalgia, back pain, and neuropathy. I’m in pain every second of every damn day. Some days are manageable and other days it’s off the charts. I literally look like a different person (chemo curls are back) in a body I don’t recognize at all. 

Being naturally resilient is a blessing and a curse. Even when I don’t want to show up for myself I somehow always manage to push up and just do it. I’m fully immersed within the cancer space. There are days where I feel passionate about my advocacy and days where I am utterly drained. I have to continuously remind myself that it’s okay to put myself first and can say no to various requests of my time. That doesn’t mean I am selfish or don’t care. That is self-care.

For the first time in six years, I did not completely wallow on that day. You see, cancer cannot take away the essence of me, you or anyone. Ever. The one constant that brings me pure joy is the arts, specifically the theatre. So, I went to see a musical with another theatre friend that evening. It was the first time I had done something that literally breathed life into me. I fully enjoyed myself and felt the familiar feeling of walking into a theatre and feeling like I was home. It was an evening that cancer could not touch.

Until next time,

Warrior Megsie

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Layered Loneliness

Warrior Megsie 8 Comments

I think back to the start of my breast cancer experience five years ago. The struggle to just survive the toxic treatments, multiple surgeries, blood transfusions, and complications post-treatment makes me wonder why am I still here? I was initially filled with such hope once I was officially declared as no evidence of disease – I refuse to say cancer free.

I am now infertile and in medically induced menopause well before my time.

I have fibromyalgia.

I have neuropathy in my hands and feet.

I have a bulging disc and slight tear near the nerve in my back.

And I discovered in January I have two benign lesions on my spine that need to be monitored.

I get so angry when I hear the following comments:

  • “Just be grateful you’re alive.”
  • “Cancer doesn’t define you.”
  • “Be happy you’re single.”

As I listened to various cancer conferences this month, the bulk of the female presenters often begin their talks with how they fought cancer to be there for their kids. Do they ever think about how crushing that is to hear as a single cancer survivor? I don’t mean anyone who divorced during or after treatment. I’m talking about the survivors like me who were single at the start of diagnosis and still single post-cancer.

When I think about it, I honestly didn’t have much motivation to “fight” to survive my cancer treatments. The main reason I did was for my beloved mother and cat Nathan (Natey) Edgar. That’s it.

I am single.

I often feel very alone.

I’m an only child.

My life post-cancer still feels quite isolating.

I don’t have many local friends. I know a lot of people locally, and have many acquaintances, but there is only one who I talk to weekly and would hang out with once a month before the pandemic. The bulk of my friends are out of state and in other counties. Many of them are married with children, or they have a significant other. I don’t really know many single and childless people – male or female.

I always hear that I should just get out there and date. Any guy would be lucky to have me. Well, I would say that would be a true statement, but my color makes dating tough. That’s a whole other story for another day. Now that I am in menopause and in chronic pain 24/7 makes dating feel impossible. The only time my dating life was pretty active, and fun was when I lived in LA in my early to mid-20’s.

I’ve tried so many different medications, surgeries, and supplements to help ease the pain, but nothing has fully worked effectively. What people don’t understand about fibromyalgia is being touched can cause horrific pain. It makes sleep difficult. It makes exercising difficult. It makes simply existing difficult. Then add permanent neuropathy in my feet makes walking difficult.

When I did try dating a little a year post-cancer, I remember one guy asked why I was walking so stiffly. I thought I could hide how painful it can be to even step onto a sidewalk or go up steps. I didn’t bother saying it’s due to cancer. Instead, I said I was sore from working out earlier that day.

How can I even think of dating when I literally cannot hide the physical pain?

Are there any single and childless cancer survivors who are also only children? It’s like lonely, on top lonely, on top of lonely. This is the one time being the only one isn’t an advantage.

Until next time,

Warrior Megsie

Cents & Sensibilities

Warrior Megsie 14 Comments

It’s been a slightly difficult start to 2020. Toward the end of 2019, I spent hours on the phone with insurance, my primary, oncologist and doctor appointments fighting to get an MRI approved for my lower lumbar spine. Pleased as punch that I got my primary and oncologist working together as a team. It was a weight off my shoulders to have two exceptional doctors and a nurse advocating just as hard as I was to get it approved, especially during the holidays.

The good news is after being denied for the MRI twice by Cigna’s third party, my oncologist had a peer-to-peer discussion with them earlier this week. As of Thursday, January 2nd my MRI was approved. I was already organized and had rescheduled it two weeks ago for Tuesday, January 7th and will discuss the results and plan of action on Thursday, January 9th.

So, while I’m proud for advocating for myself along with my medical team, I’m still pretty pissed that I will be responsible for paying 80% toward my deductible since the MRI approval came on the 2nd. I truly do feel like Cigna did that on purpose so they wouldn’t have to pay because I had met my deductible and was $75 away from being covered 100% by the end of 2019.

It’s downright criminal that many of us must fight to receive the coverage and tests we deserve. Then we’re often stuck with huge bills that seem never ending.

A new year always brings added stress because of high insurance deductibles. Am I happy to have insurance through my employer? Of course, but it comes at a steep financial cost since I have to rotate between an MRI with contrast or an ultrasound every six months along with my diagnostic ultrasound + the cost of medications + copays to specialists. Me being me, I’m planning on fighting my portion of the MRI cost and file a complaint against the insurance. Sure, nothing will probably happen in my favor, but I must at least try for my piece of mind.

I do believe those pesky lesions on my spine are benign, but who knows what’s been growing there all this time since fighting with Cigna. Will they have to be burned off? Hell, if I know. Plus, will I have to get injections in the lower left side of my back to deal with this spondylitis? Will PT be part of the plan too?

All I see are dollar signs and scheduling conflicts as I move meetings at work to make it to appointments.

I’ve had people tell me to enjoy life, go on vacation and travel. I get so infuriated when I hear those suggestions. My insurance deductible through my employer is $6,500. How am I supposed to have fun and go anywhere or even save when that kind of cost looms over me? Getting critically ill is expensive and ongoing in the aftermath.

I want to go to different cancer conferences this year to meet more of the fabulous cancer warriors I’ve been talking to on social media but can’t take that kind of time off from work or have the extra funds since it all goes toward my high deductible. Yes, I know there are travel grants, but as I get older, I don’t qualify for some of those anymore. I’m at a weird age where I’m still “young” but not young enough to be eligible for some grants. Plus, I don’t have the energy to fill out applications once I get home from a very long day of working. I’m often mentally and physically spent.

As many look upon this new year as filled with possibilities, I’m already feeling the financial stress due to my health and the financial toxicity that is US healthcare.