Acceptance is Key!

Finding out that you have to live with a chronic illness for the rest of your life is not easy. Depending on your symptoms and other health conditions, there is a lot you’d need to factor in as a patient.

I am in no way telling you that you’ve got to move on right away, but I suggest you take your time and utilize your resources to understand your condition, what treatment options are available for you, and how you plan the process ahead.. Do what you think would be best for you.

My way to cope with the reality was isolating myself and taking it all in and understanding the process. That might not have been the best way but that is how I deal with things.. I try to be alone.. Guess that’s because I am an introvert..

Remember you are not alone. You have a team of healthcare providers – start by talking to them and clarify your doubts. The national MS Society has a lot of information especially for new patients, so sign up for the news letter. Try to connect with other patients and create your warrior squad.

Do not overthink because you are stronger than you think!

A New Normal..

The year 2020 has been an eventful year in so many ways primarily due to the pandemic; however, everyone is battling a different battle. My battle represents me, who I am and who I sought to be.

I constantly say and hear others say that, “2020 was supposed to be my year.” The global pandemic has changed lives from working from home, homeschooling, social distancing to people losing jobs. 

While in lockdown a lot of people have had the opportunity to look within and ask themselves about what means the most to them? What are some values that they’ve had but haven’t put to practice? What are some relationships that they want to improve? How do they want to use this time in isolation to improve themselves?  These are some of the questions I’ve asked myself and I am sure others have asked questions based on their lives.

While everyone tried to adjust their lives with the given circumstances and talk ed about the “new normal”, little did I know that my life was taking a 180 degrees turn to a forever “new normal”. 

On May 8th, I woke up with blurry vision in my right eye, throbbing pain in the eye and the right side of my face with increasing pain with eye movement. I immediately knew it was an Optic Neuritis of the right eye because around the same time four years ago I was diagnosed with an optic neuritis of the left eye, after experiencing complete vision loss and pain in the eye. I let the weekend pass and made sure the Neuro-Ophthalmologist I saw was still in network with my current insurance plan. 

The whole time I knew what he was going to order and at that point I was ready to go through the diagnostic process. On Monday when I saw the specialist, he saw inflammation behind my eye so he ran some in house visual tests, ordered MRIs, and referred me to see a Neurologist- I knew the drill and like I mentioned before I was anticipating the same process; the only difference this time was that he said, “it’s about time you see a neurologist!” I left the office, informed my family of what was going on and started scheduling appointments. 

After my MRI report was written, I was told over the phone that there are unusual white matters on my brain scan compared to my scans from 4 years ago. As any other person would, I consulted Dr. Google and read about lesions and what the next steps are in the determination of a diagnosis; I read all that was available to read about lesions and Neurological disorders. 

The whole time I remained calm around my family and friends and acted like yeah whatever we’ll find out what’s going on, all while deep down I was freaking out. 

I had a Neuro consult and the provider showed me the lesions from my scans and talked to me about a possibility of Multiple Sclerosis; however, she wanted to rule out Neuromyelitis Optica, deficiencies, viruses and infections at the same time. 

After hearing her say those words out loud, I burst out into tears because I didn’t want all those things I read online to be true or even a possibility. She ordered more scans and an extensive panel of blood work to determine the diagnosis. 

I spent the next 2 weeks getting tests and scans done and waiting for my next appointment to find out the diagnosis. In the meantime, I started seeing reports being released to my patient portal; some I understood, some not so much. 

I couldn’t sleep two nights before my appointment. I tried to stay as positive as I could but now that I look back I was anxious about finding out what I had and how to move on to the next step more than having a chronic illness.  

At my appointment, I was told that I had Multiple Sclerosis based on the lesions in my brain, optic nerve, and the spine. Based on my results, I was presented with a couple of treatment options and I was given time to consult with my family and PCP. I decided and started treatment in July, a lot has changed since starting my treatment as I keep learning new things about my body and how to cope with it all.  

xoxo

Komal