For those of you that are new to IWWB, Pass the Mic is a way to give other spoonie warriors a platform to share their chronic illness journeys with each other. Sharing helps us feel a little less alone in our battles. Wanna be featured? All you have to do click here.
This month’s PTM warrior is Jasmine. She is a fellow Snowflake spoonie. Let’s see how her journey with Myasthenia Gravis has been.
So what’s your name and where are you from?
Jasmine J from Chesapeake, VA
How old were you when you were diagnosed with Myasthenia Gravis? What events led up to the diagnosis?
At 29 years old, myasthenia gravis become the new regular, a word I never heard.
First, my eyelids started to get heavy, and the trouble with vision, especially when in direct sunlight. I started to develop a double and blurry vision.
That went on for about 24hrs the next day it got worse until I was taken to the emergency room. I had an MRI, CT Scan, Lumbar puncture, and a significant amount of bloodwork.
After doing all of these tests, I was first informed that Myasthenia Gravis was the diagnosis.
What has your treatment plan been? Which medications have you had the most success with?
The treatment plan for my myasthenia gravis at first consisted of prednisone and Pyridostigmine.
It has now grown to Pyridostigmine 180mg/90mg, Predisone 10mg, Tacrolimus 4mg/1mg Afternoon, Calcium 200mg, Bupropion 75mg, Melatonin 3mg, Vitamin D3 1000 Unit Tab 3 Tablets, Doxycycline 100mg, Daily-Vitamin supplement, Diclofenac na 1% Top Gel.
I currently do IVIG every three weeks. I have had a robotic thymectomy to remove the tumor in my chest, and plasmapheresis.
So far, the medications that I am taking seem to keep me functioning. The IVIG I believe gives me the most energy out of everything.
Are you in remission? If so how long?
No remission yet.
Besides the symptoms, what’s the most difficult part of having a chronic illness for you?
The most challenging part of apart having a chronic illness is mourning the old life I lost. I had to leave the job, and the divorce came.
I am not sure if it was a curse or a blessing because it exposed a lot to me for the individuals who needed to be there.
What’s the biggest impact Myasthenia Gravis has had on your life? Have you had to make any changes to your everyday life?
The biggest impact would be my mental adjustment to having a war within myself. I have conflict with understanding what I want to do with my life.
My limits scare me and sometimes they are out of my control because of my disorder.
Besides physically what other effects has Ehlers-Danlos Syndrome had on you (mentally, emotionally, spiritually, financially, etc)? How have you worked through these issues?
Mentally I have had to talk to the therapist in order to adjust because I could not understand why this had to happen to me.
Financially it has put in a position of if I work, I might overwork myself and end up in the hospital, and if I don’t, I want not to have enough money to sustain myself.
Emotionally I have moments when I want to cry and give up. I do not want to wake up and take medication every mourning or have to remember doctors’ appointments.
I have come to terms with the fact that MG is apart of my life, and I have to find ways to integrate it without overdoing it for myself.
Who or what has helped you the most in coping with your diagnosis?
I would say one of my Veterans Affairs therapist she helped me to see the worth in this diagnosis as well as my family to a certain extent.
What goals have you been able to accomplish in spite of your Myasthenia Gravis? What’s next for you?
When it comes to goals I’m in the process of losing the weight I gained from the predisnone.
I’m going back to school for my PhD and I’m working on my life adjustment. I might start working again.
Who knows – I want to find balance in life for better days ahead.
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed ?
Patience honey ! it won’t be like this forever your tears are heard with time everything will get better. You are truly resilient!
Any other comments or words of wisdom you want to share?
I have learned to embrace the storm. Not to run from it, but to look for the value it brings, then learn from the experience.
I may not always see the sun from the storm, but I know it’s up there.
“Learning to Dance in the Rain” simply means that one has learned to not allow anything to deter them from reaching their full potential.
They don’t just wait for bad things in their life to go away, instead, they have a positive attitude and take challenges head-on and enjoy the journey.
If you’d like to connect more with Jasmine you can find her on IG : Love2beme29
Also, if you want to know more about Jasmine and her journey, she and I are going live Wednesday 6/17 at 6:30pm EST to chop it up and dig a little deeper. Make sure you tune in to my Youtube Channel to catch it.
In the meantime, check out this video Jasmine and I (as well as a few other MG ladies) collaborated on a cool idea I had for Myasthenia Gravis Awareness Month.
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