I recently got the chance to spend some quality time with my
father while he was going through radiation treatment. I was there to help care
for him and support him as he battled his way through the emotional and
physically exhausting cancer treatments. What I didn’t know, is in many ways,
he would be supporting and helping me find strength in his example.
My father is an optimistic person, even in the worst of
times. He would always tell my brother and me, “Don’t let the bastards get you
down.” He always told me “not to panic” and that action was better than
becoming emotionally overwhelmed and immobile. He has faced cancer the same
way.
With only a week left in radiation course, my dad was asked
to talk to a woman who had recently been diagnosed with the same cancer as him.
He agreed. The woman was overwhelmed. She was barely speaking clearly. She had
two small children at home and she was scared, very understandably so. She
asked my dad about the radiation treatments and their side effects. He spoke to
her calmly and told her he only had a week to go. He told her that eating, swallowing,
and throat pain was the worst of it. He told her his voice had not really
changed and showed her the burns on his neck. She told him that she did not
understand how she had throat cancer… that she wasn’t a smoker, and that it
wasn’t fair. And my dad looked at her and told her, “No, it’s not fair. But
this is the hand we were dealt, and you can’t change that now. So you have to
fight. You have to go at this head on and fight it. We are the lucky ones. Our
odds are good. It could have been much worse the way I see it.”
How right he was. Sometimes things happen, beyond our
control, and even sometimes within our control, but the most important thing is
how we react to them. How we move forward. Was it fair that I was diagnosed
with AS? No. Can I change it? No. So, what’s next? How do I make it better? How
to I fight the symptomology and live my life in a beneficial way?
I thought a lot about this blog over the last week… I want
to be able to share the positive things I am doing to rebuild my life, keep
myself moving, and the support I have received. I want to share that with all
of you. This blog should be a source of support and information with those
diagnosed with AS. But, it is also an outlet for me. It is a way to communicate
with loved ones and bring awareness to others about a disease so many people
know nothing about.
My experience with AS is going to be different from many others, but that is because no two people are alike. Symptoms will present themselves differently and respond to some things better then others, but I do believe it is absolutely crucial for all those diagnosed with AS to keep moving! My pain is mostly in my SI joints, with pain presenting more commonly on the left side rather than the right. In the last few months, my thoracic spine has become much more of an issue. It has gotten extremely tight and achy. The muscles surrounding my spine have seized and I have needed adjustments. Luckily, my roommate also happens to be my Physical Therapist. Talk about a dream come true. She also cooks and helps me stay active. #prettyluckygirlhere. What I consider "everyday" pain is very different from a flare. On any given day I will have tightness, aching, soreness... I will feel like my spine is being pulled by tight rubber bands, trying to curl the spine forward. I try to resist this curling with stretching and sitting up straight, but it can be very exhausting on my muscles. Hot baths, walks, and adjustments help greatly. I also have been working on creating a yoga sequence that will help me with this pain. Hopefully I can share some thoughts with you on that soon!
As far as medication goes, i am still on 7.5 mg Meloxicam (mobic), which is an NSAID. The biggest things to be concerned about while taking a drug like this are liver/kidney functions and internal bleeding. So far so good, but its not a forever answer. I am not sure any drug is. I have been able to avoid drugs like Humira and Enbrel for almost 2 1/2 years, and for now... that continues to be my plan. Any drug where CANCER is a possible SIDE EFFECT seems like it should be thought about a few times before taking. Other personal things I do for treatment and pain relief are Iyengar yoga, stretching, heating pads/icing, sleep with a bolster under my knees, massages, walks... you get the idea. I believe these things really make a difference. I also believe that a Physical therapist is CRUCIAL to long term AS care and symptom control.
According to arthritis-heath.com:
"Physical therapy and active, low impact exercise help considerably in the treatment of ankylosing spondylitis because they can prevent or slow development of a stooped posture which is a characteristic of many ankylosing spondylitis patients, as well as maintain movement and flexibility in affected joints. Physical therapy generally will focus on promoting good posture, stretching to achieve greater flexibility, as well as strengthening exercises to support the spine. Deep-breathing exercises can also help patients focus their energy and increase lung capacity.
In addition to participating in physical therapy, some patients find relief from special support devices. Although they do not help in treating the disease, they may help maintain the posture or position achieved through physical therapy. These include:
- Lumbar supports (e.g., lumbar support pillows)
- Back braces
- Support mattresses or zero-gravity chairs.
It can be emotionally overwhelming to think about AS as it pertains to my life both now and in the future. Yes, I'm scared I will have a flare and be limited in what I can physically can do, I am worried about how it will impact my choices in the future for starting a family, I worry about what it means for me in my 40s and 50s, I worry about not feeling like myself... These feelings are understandable and sometimes unavoidable, but they are not what is going to keep me moving forward. As my dad said, this is what I was dealt. It was not fair and it is scary, but now I have to live in a conscious way. A way that protects my body and keeps me moving. I am one of the lucky ones, it could have been so much worse. After all, I have AS and I spent last Saturday skiing. And when I need to supplement in some treatment, I do all the things I told you about above... but most importantly, I try to laugh. It keeps me feeling good.
Take care, love bugs. Hopefully I will be writing more soon!
Amanda
