We are sharing personal stories written by individuals impacted by Myasthenia Gravis. Today’s post is written by WWMG member from Canada, Dee Latta.
Dee is sharing a series of three posts that she wrote. When she originally wrote them, she shared them only with her personal friends on Facebook. Today she is generously allowing them to be shared with the world.
They provide a glimpse into what life with MG is like, before diagnosis and after.
My Neuro-Nightmare Communication
(written December 2009)
As many of you know I am going through a pretty rough time of things with regards to my health. Most of you also know how much I like to talk, though I am told I’m a pretty good listener too – I’ll often pull up some little tidbit you’ve shared with me a couple of years back and you’ll be incredulous that I can recall that. I can because I DO listen!!
On my good days when I am speaking with you, if I suddenly seem at a loss for words, it’s because for the first time in my life, I really AM at a loss for words. If I suddenly stop speaking, it’s because I am searching for a word that I CAN say, rather than the one I WANT to say. If my answers seem short and curt, it’s because I am doing my utmost best to condense things to save what precious little voice that I do have.
If I ask you to repeat yourself 3 times, it’s because my hearing is going too. I really NEED your patience here & I WANT to hear what you’ve said.
If you don’t hear from me for weeks on end and out of the blue I call you, though I may reach your voice mail and leave a message, I may not be able to talk when you do call me back.
Please understand me. My world is getting smaller. I have always been quite able to articulate and enunciate my words. I have been told I have a gift with my way of words. Again, my gift is still here within me; I just can’t get it out there anymore. So this is my only means to articulate.
Some of you may say, “Facebook!! WHY Facebook??”
And my logic behind this is, that my illness is very complex and swift. It has taken me quite by surprise, although some signs have been present for a very long time. And I just can’t keep explaining what is going on. So Facebook it is. If you care to read my postings, which I know some of you will, I know it will keep you from expecting me to explain it to you over and over. Because it is very complex, I feel the explanations are very in depth. Facebook to me, is a gift that allows me to keep my world from shrinking too much too quickly.
I hope you’ll understand. It seems that this is my life now. I hope you’ll adapt to my changes, as I am being forced to as well.
My ability to SMILE is NOT affected!!
I’d like to wish all my Facebook family, friends & their families a Merry Christmas & Happy New Year!!
This was a very difficult time for Dee, as it is for all MG patients during the time when we know some thing is wrong, but doctors have not yet diagnosed us. So we know we are facing something big, we just don’t know what it is yet.
This photograph was taken of Dee during a rough moment. She was looking out at the water and feeling so sad that she wasn’t being heard.
She added the text to this photograph, turning a struggling situation into a positive one, as Dee often does.
I have had the biopsy. (THAT WAS FUN!!) There were a number of tests run on my ‘chunks’ of muscle that were taken. They were all negative. Or so we thought. One has just recently come back positive. So MORE tests are being done.
Meanwhile, I am undergoing treatment for complicated GERD. And incredulous at the results of taking this medication twice daily. My swallowing and speaking have improved. Still not 100%, but a heck of an improvement!! I still choke on food and inhale saliva. My facial muscles are still weak, so I get tired of speaking & chewing my food. I still have some significant hearing loss. But on the upside, things have improved, I have gained some much needed weight!! My jeans are all getting too small, as I near my ‘pre-illness’ optimum weight!! I am happy about this, but a little upset at not having jeans that fit well. But I think that’s the least of my problems!!
I’m also being scheduled for an endoscopy. One that SHOULD have been ordered when I failed a modified swallowing test 18 months ago.
Fibromyalgia STILL SUCKS!!! I’m in almost constant pain with that. But it’s something I have learned to live with. I don’t have too many dopey drool days anymore, since I have learned to pace myself!!
Most of all, it really helps having a strong support network and loving, supportive people in my day!! Since I originally wrote this note, I have lost a dear friend to cancer – she was a big support to me. But since she’s been gone, I have gained a few more people I can reach out to. Makes a world of difference!!
Take care of each other & to each of you battling your demons, don’t give up the fight!! xoxo
At that point, Dee still didn’t know what she was fighting.
She finally received an accurate diagnosis in May of 2012. Below is what she shared with her friends in August 2012.
What Myasthenia FEELS Like
It feels like you KNOW you have a ton of things needing to be done.. It’s like a roar in your head.. You know what NEEDS to be done and the litany of neglects around your home screams from every corner… Both inside the house and out..
Yet your muscles just won’t cooperate. They only allow you to choose ONE task or a couple of smaller ones, or even some days NONE.
You hate spiders in your house, and you see one down in a corner. You ask yourself, “Do I have the energy to pick that up?” But you know that could be the one that bites your daughter…
Your only bathroom is up a flight of stairs… And you wonder, “Do I need to go THAT bad?” Your boyfriend takes you to the portable urinals in the medical aides aisle.. You know he’s trying to help.. But you want to cry..
You scrub your shower while you’re IN it showering, because there’s no other way it’s going to get done!
When things are bad and I cannot speak well.. My voice is weak and tired.. I’d love a long chat on the phone.. But I’ll call you later, because not being able to say everything I want/need to say is somehow worse than not talking at all..
I feel a loss most days.. I miss my bike rides. I miss walking downtown. I’m always worried I may not be able to make it back.. It’s only a few blocks away.. 🙁
I have no clue what it’s like to not have a proverbial pile of laundry needing to be done…
I FEEL heavy!
I feel like a huge disappointment..
I feel humble.. YES, it has helped me a lot in ways I never imagined.. I never judge a book by its cover. You never know what someones battles are, just because they look good. No one knows by looking at me, how much it hurts to hold my arms up to do my hair and makeup, yet it’s so important to me to look good. I feel like crap, but I refuse to look it too.. I’ve learned to improvise with my hair. I use gel and root boosters & scrunch my otherwise straight hair into ringlets. And I let it dry that way. A little muss, far less fuss!
I’ve also learned to never take a good day for granted… I’m thankful for what I have & grateful I am not worse. I can still walk and I can talk again.. I’m also grateful that my doctors are no longer able to call me nuts. That was the hardest part – knowing things were bad, yet no one was listening.. (The referral to a psychologist was removed from my file.)
I can’t speak for everyone – we’re all different.. But I am just TIRED!
On a more positive note, my support system has strengthened. My youngest child has graduated university and has more time to assist me with some of the mess and clutter our house has become. We’ve started one room at a time. We won’t get it all done in a day, but it’s an improvement.
She understands my illness today and how it works, and just that alone is a huge help!
Life has improved.. But still so much uncertainty. I still cannot make a firm decision to do thymectomy or not.
I think about it sometimes, and if I could be 100% certain that I won’t wake up with my sternum cracked, I might be able to just say YES to it.. But I’ve agreed to VATS (video-assisted thoracoscopic surgery) and signed a waiver that my sternum will be cracked if there’s any complications that may deem it necessary. So I have panic attacks about that. The ‘what if’s’ get me.. What IF the surgery makes my MG worse? I’m getting by now.. Not fantastic, but just managing. And because I KNOW it can get much worse, I think, ‘WHAT IF I DON’T have the surgery and I get worse?’
Where’s that crystal ball?
– Dee Latta
Dee is currently awaiting the scheduling of her thymectomy, via VATS, and continues to fight the good fight against MG. In the meantime, she continues to keep a positive attitude and inspires me regularly with her dedication to healthy choices and her beautiful photography.
– Debbie Norman
founder of Women with MG