Letting Go of the Anger, Many Years After Diagnosis
On the inside of my right arm, just above the bend of my elbow, I have a small, circular scar. It’s a shade lighter than my skin tone and about the size of a peppercorn. It isn’t very noticeable, and I think I’m the only one who can see it. But although it’s small and hard to spot, it holds a deep significance for me.
The scar was caused by a PICC line that had to be inserted when I was in the intensive care unit due to a myasthenia gravis (MG) crisis. It isn’t the most traumatizing memory from that time, but for some reason, it holds power over me. That power used to be negative. What else could the scar remind me of besides fear and anger?
But time has made me look at it differently. My tiny, circular scar reminds me that I was hurt, I was in pain, but I made it. The wound closed, the skin healed. I’m still here.
It has taken me years to accept my myasthenia gravis diagnosis. And when I say years, I mean years. I have never met a problem I couldn’t compartmentalize, but there’s no way I could avoid this.
Previously, I spent too much time being angry at the hand I was dealt. The only point of view I had of MG was negative and pessimistic. Even when I was responding positively to medications and surgery, my anger stayed, settling in my chest like a bomb waiting to explode.
But the anger never made me feel better. The bomb became bigger and bigger, to the point that any little annoyance or inconvenience made me irritable beyond belief. But what was this anger doing for me? How was it helping? The short answer: It wasn’t.
I wish I could say I read some inspirational book or had some epiphany, but my attitude adjustment took a while to happen. I realized I couldn’t change my diagnosis, but I could change my reaction to it. Instead of being angry, I could learn from my experiences.
Myasthenia gravis is a part of me, and it will never go away, but I can still make it mean something. I can’t say I’ve found meaning in every single experience I’ve had in the past 10 years (I’ll never mentally recover from those bed baths), but I now look back on those memories with clearer eyes. I am here now because of those events, so how can I be mad about them? It was hard, it was grueling, but it didn’t break me. Now, I can look at that tiny scar on my arm and feel grateful that I’m still here.
With this column, I hope to help readers find strength in their weaknesses. Whether it’s physical or mental, we all have times when it feels like our helplessness will swallow us whole. But one thing I have learned throughout my MG journey is that times of weakness can only lead to moments of strength. We don’t know how tough we are until we have to be, and myasthenia gravis has taught me this lesson time and time again.
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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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Comments
Paul L Daubman
Great story. Thank you for sharing.
Michelle Gonzaba
Thank you!
Rosa Lombardi
Dear Michelle, thank you for your article. I couldn't agree more! I was diagnosed in 2012. I also spent 24 days in UCI due to crisis. I have come to accept that I'm a part of MG instead of the other way round so I have learnt not to give up. I keep on struggling. With my best and looking forward to reading you again, Rosa.
Michelle Gonzaba
Thank you for reading Rosa! I struggle on and off but I never lose hope. Stay strong!
Ida
It was great,, we should accept what we get although there
Are many many times we revolt,cry,and lose hope.
The treatments help a lot .we are thankful when we are in
Remission and always hope for a stable life.
Michelle Gonzaba
Yes, I agree with everything you said!
Patsy Bobb
I love the positivity. Very well said. I give you thumbs up.
Michelle Gonzaba
Thank you!
Kenneth Mckinnish
I need someone that help me understand this because I’m about to lose everything I got on account of mg. I need a good doctor
Michelle Gonzaba
Hi Kenneth, if you haven't done so, I would try looking for a neurologist in your area that specializes in neuromuscular disorders. The MDA has a list of offices that specialize in these types of diseases. https://www.mda.org/care/care-center-list
Vera
💗
Michelle Gonzaba
Thanks for reading Vera!
Carla
This was uplifting and hopeful for all of us. Thank you for sharing a part of your life.
Michelle Gonzaba
Thank you Carla!
Jonathan Autore
I have been very angry !!!! But it was not because I got M.G. .... but because for 8 long months I kept getting weaker and weaker ... as more of the Myasthenia Gravis symptoms appeared and weakened me further ....... AND NO DOCTOR....WHO SAW ME could diagnose my MYASTHENIA GRAVIS. It was as if they do not teach NEUROLOGY in Medical School at all. They kept doing tests and MRI's that came out clear ... because they GUESSED I had a brain stroke or acid reflux/GERD because I had food in my lungs and nose ... but my tests said NO. Instead I decided to go directly to a hospital emergency room at 6 months. Instead of a diagnosis and a cure or a remission, I got three pneumonias (CITROBACTER FARMERI, STAPHYLOCOCCUS AUREUS, and ASPIRATIONAL) along with a collapsed right lung, acute respiratory failure, and three holes in my chest, back, and throat ..because the doctors and consultants were totally ignoring my 8 or 9 Myasthenia Gravis symptoms that they did not associate as one disease. So at the first hospital for 4 weeks no diagnosis ... so they sent me in ambulance to second hospital ... after 4 weeks still no diagnosis. Finally a floor nurse at the second hospital listened to me and saw all my symptoms ... and instantly diagnosed me with MYASTHENIA GRAVIS ... got me tested and IVIG treatment and pills started. She said right away ... I know exactly what you have .... we have patients right here in this hospital that have ALL THE SYMPTOMS that you have ... YOU HAVE M.G. !!!!!! SO my anger and being sick was due to doctors who could not diagnose MG despite all my symptoms ,,, which ended up being all 8 or 9 of them being RIGHT ON THE MONEY !!!!!
I was so happy to find I had M.G. I got my diagnosis ... and am in remission. I was not crazy. The doctors and my Healthcare lacked the knowledge. I even had one doctor ... a Cardiologist ... who cleared me of any heart diseases ... as a possibility .... declare me in print .... that I was a "POOR HISTORIAN". All my 8 or 9 symptoms that I told the doctor about .... turned out to be right on the money .... and the nurse gave me a printout from www.uptodate.com called "MYASTHENIA GRAVIS: THE BASICS" ... that listed every symptom I had and I told doctors about.
Michelle Gonzaba
It is insane what you've been through! I am so happy you are in remission. Thank you for sharing your story!
Theresa Goldstein
I can very much relate to the disturbing non diagnosis when it is staring them in the face.
My symptoms began in maybe 2010-2011? Unfortunately I also got a rare cancer which pretty much everything got blamed on.
It was not until I had my cancer dx in 2014, after 18 months of searching for that, and after 6,8,12,18 weeks after my cancer surgery I never felt better. Despite my drooping eyelid, double blurred vision, who my Nuero opthamologist did send for labs, which were negative but a very renown university medical centers Neurological head determined I could not have MG, after another doctor referred me to out of suspicion.
It was 10/2020 I finally got a diagnosis. Funny how grateful one can be for a diagnosis just so there is justification for not being able to get out of bed, or having to go back to bed after your shower and feeling like you are dying.
Now at 67, of course I am getting older, but it is a real challenge.
I currently have a good neurologist in L.A. however, due to a rare bacterial undiagnosed lung infection, I am on 10 mg of prednisone and 2-3 60mg of mestinon a day, I am curious what treatments others have found successful.
I am seronegative MG.
The Dr. wants to put me on Cellcept as soon as the pulmonologist clears me.
I am also looking for websites that are most productive at learning from other patients experiences with treatments.
I appreciate any input any of you may offer in regards to websites, conferences, etc.
Michelle Gonzaba
Wow Theresa, you have been through so much. I definitely know how much relief you get when a doctor finally confirms what you already know. Our website, Myasthenia Gravis News, has a lot of information about treatments. I would also check the MDA website which has more information as well. Thank you for sharing your story!
Jana
Hello,
Thank you for your article. My Husband has been fighting for 14 years with MG and Recurrent Thymoma. His struggles are something some may not ever imagine. Stanford Doctors say he's one in a million as far as the amount suffering they have seen. The antibodies put in his system by the cancer cells are attacking random parts of his body, like his kidney one year, and stomach the next. If it helps anyone to read a little about someone really in the thick of it, they recently did a story on him in the newspaper. Here is the article:
https://www.santacruzsentinel.com/2021/03/12/santa-cruz-photographer-documents-terminal-illness-on-own-terms/
Michelle Gonzaba
Hi Jana, I'm so sorry your husband is going through so much. I read the article-both of you sound like fighters. And his photographs are so powerful. Thank you for reading and commenting and I send good vibes to you and your husband.
Karen Houston
I was diagnosed with Myasthenia Gravis in 2014, 2 years after they removed a tumor on my thymus. It's been an okay road. Had one flare which put me in the hospital 4 years ago and this previous year I have been in and out of the hospital trying to see which treatment can get me back feeling 100% again. Pyridostigmine bromide just makes me nauseous all day and didn't help my droopy eye or swallowing so I need to try something else which was natural herbs recommendation from multivitamincare. org This herbal treatment has successfully cure my MG and am 100% free ,I completed the herbal treatment program last year December and am very delighted i came across their website.it starts in the eyes and face then bulgar muscles , without treatment or the proper dosages of treatment it goes on to my limbs and then neck and breathing muscles but I can happily say that am free from MG after taking my chances to try natural herbs ,my neurologist was surprise after my result of being totally cured with herbal cure from the org.
Michelle Gonzaba
Hi Karen, I am so happy you are doing so well! It's fantastic when you find a regime that works for you. Thank you for reading and sharing your story!
Lyne
Thank you for sharing, I had ocular problems in 2000, and they were thinking it was fybromyalgia, but a saw a specialist of fybromyalgia and he said no you don’t I was so surprised I live in Quebec province with a certain diagnostic, and Ontario another. Always tired I had the impression to fight all the time against fatigue and effort. But when my eyes were so bad double vision I thought I was getting blind, so I said I will go back in Ottawa and see my good doctor
I was transferred to an hospital with tests and there it was possibility of MG, I go back to my neurologist in Quebec 5 years after, to say finaly it sure was MG. But my neurologist did not know I was still seeing double I could not even drive anymore. Had thymectomy now on m’est I on, was too sick on prostigmine, sorry I am french, and now just had vascular surgery and I am on cortisone, I am week, legs one step up and I drop as quickly, so I decide to paint and do arts to occupy me. I don’t know when they will be second leg. But here not many people understands MG. There is not enough information around. I arrive to hospital and I still hear you have what? But here I am 21 years later and sharing with you. Neurologist passed away and since I heard so many opinions that I stayed with my very competent family doctor all these years, and I will lose him June 30th this next month, no doctors on a web list and no neurologist… here is my little story as of today. Have a good night…
Michelle Gonzaba
Thank you for sharing your story! I am so sorry you are losing your doctor this month. I know how hard it is to find someone who knows about MG and is trustworthy. I hope you find another doctor soon!
Lyne
They told me no natural products with MG ?