Congratulations on your date! I just got booked today myself, August 8. I’m so happy for us!

I do but primarily wear contacts. I have a harder time seeing in general with glasses instead of contacts, but I could definitely do a rotation to use a cover to just give the eyes a break.

Well, you certainly hit the nail on the. I think it’s a “takes one to know one” type thing. I’ve been a single mom of 4 for about a decade. I have always been the one everyone wants and needs in a crisis. I have a career I love that took a lot of twists and turns to end up in small government, because dammit I love to help people and want to make an impact. So not being helpful (and the end of my own gym career) is not happening naturally. Yes- I’m struggling to ask help Yes- my family wants to be helpful but also they get tired of being helpful and seem to struggle with missing the old me. Sometimes because they care and sometimes for selfish reasons. I’m hoping it gets better from here, but none of us are going to be how we were at 32 again anyway. There’s no going back. I don’t know how I got on the roster for this club, but I guess it’s time to settle in for a while.

Thank you. That’s very practical advice. He’s never trying to be insensitive. We already have the dynamic where he never knows what’s going on and I’m usually in charge. It’s just been weird now that I’ve been so unwell. He still asks me where the ketchup is instead of looking. But you’re right, if he wants to be helpful or understand what’s going on he should probably do some research instead of expecting that I’m capable of being the all-knowing source of wisdom. Now I feel like I know how the conversation can go, and suggest he do some reading. It’s just a lot for his poor little brain. 😂 (have to joke about it, being mad doesn’t help)

Yep, both. And it feels like the diplopia perpetuates the ptosis. The more my eyes struggle to focus the less my eyelid wants to open.

I found some cool ones that are adhesive that say “don’t ask”. Some plain black ones too. Hopefully it at least helps how tired my eyes always feel.

Yeah, it’s driving me crazy. And I think it’s making my right eye droop more because it has to do so much work to try to focus.

Darn right! Time to do this 👊🏻

My neurologist is using a trial run of mestinon to help with the diagnosis since I tested negative for antibodies. So I haven’t had any other treatments and am still kind of at the bottom with this crap. Has IVIG been helpful? Did you have thymectomy?

Thank you. I’m definitely planning on going with the pirate/viking approach. 🏴‍☠️

I haven’t been driving for a few months. Only a couple times when it was absolutely necessary. I was on prednisone back in feb and March because my right eye wouldn’t open all the way. It definitely helped but I went through a few neurologists and primary care doctors before anyone had answers, so no one put two and two together until my current neurologist. My right eye gets droopy when it’s tired, I lose peripheral vision, and have just a tired feeling that gets annoying.

I tested negative for antibodies and on emg. I spent two years being tentatively misdiagnosed with ms. The mestinon is a test to help diagnose MG, which my neurologist is feeling certain about. Now that I know what MG is it all makes sense. Unfortunately at the same time I’m having gynecological issues that also held up the diagnosis. I see my neurologist again in a week or so, she wanted to see if my symptoms responded to the mestonin to help diagnose. I’m expecting a conversation about thymectomy and other treatments at that time. I’m having a hysterectomy in a few weeks also, so the doctors are trying to figure out how to go about all the separate issues. Truly this has taken years to get a diagnosis. I’ve been dancing along the boundary of having a crisis for a couple months.

Oh, I thought of another one. My right arm stops working if I use it too much. I’ve been stuck in bed a lot the last few months so I decided to do a little knitting…mistake. I made my nephew a super cute hat and sweater. It only took a day. Then I lost control of my arm for a week. Just from using my hands to knit.

Wow, you’re making me tear up a little bit.

What a long journey you’ve been on. Damn.

I can definitely relate to the breathing crap. That went on for a year before I go a diagnosis and I swear if one more doctor told me it was in my head I think I would have died. Definitely worst when laying down or reclining, which is real fun at the end of a long day.

The torso balance thing happens to me all the time. I tend to walk along walls and furniture because I never know if I’ll wobble and need to grab something. It’s worst just after standing or if I have to turn and walk in a different direction. Just another quirk that probably makes me seem drunk to bystanders.

Definitely gotten stuck a few times. The first big time was back in February. I was helping my four year old get dressed so I sat on the floor (because I couldn’t stand for any length of time or bend over). But that was it. I just could not get up. Eventually got to a wall and kind climbed up with my arms.

Thank you for sharing. What’s your treatment been like? What’s working?

I’ve had a chronically runny nose, especially if I’ve been more active. I never used to get sick, but now I often just feel like I’m coming down with something. Usually the trigger could be almost anything.

Humans weren’t meant for desk jobs and technology. It’s time to go back to foraging and hole digging.

A) sounds like you can’t afford staff. You said you’re not paying yourself, so I think this is the main issue. Depending on where you live your county may have assistance for counseling and grants to help you move past financial hurdles.

B) in most establishments the money is made in alcohol sales. How/what are you doing there?

C) do you have an actual business plan? If not i strongly encourage you to make one. You will need it to get any assistance and data continually shows that businesses without a business plan are much more likely to fail.

It’s so hard to know if or when to walk away. But I will say if you haven’t done these other things it’s worth a try. There’s more things to look at with costs but I urge you to find a local organization that specializes in small businesses support or incubation. I have found that nationwide there are lots of resources in the agricultural sector and not just small businesses. If you are farm to table that’s something to look into as well. Some of the businesses I’ve incubated acquired more assistance through usda or the state department of agriculture.

May be worth mentioning to a doctor. But I can say I have zero control over it. When it happens I absolutely cannot force them to open, they have a mind of their own. People are not symmetrical. Heavy eyelids when you’re tired or stoned seem normal. And therefore normal that one could be heavier than the other.

Well I can relate to most of those. The anxiety has been so very frustrating. All by itself without all the other stuff the anxiety has been really life altering. I don’t feel like the same person anymore. I’m sorry to hear you or anyone else has experienced it too.

The voice and speech changes have made me self conscious at work, or really anywhere. Sometimes I think I sound drunk. When it happens I have recently noticed I have weird eye movements at the same time. Like my brain is searching for information and just buffering. It’s also a sign I need to chew my food carefully and drink a lot of water.

Amazing I’ve been dealing with all of this for so long and had no idea why. Now finding others with similar experiences is just mind boggling.

I’ve spent the last 20 minutes kinda having a meltdown. I can’t believe I feel BETTER! 2.5 years of misery and missing out on doing things I love, and every medication has made me worse. Then suddenly from a doctors visit yesterday to picking up and taking a tiny introductory dose of mestinon this afternoon and I can actually walk across the room without being wobbly. I can’t even explain the feeling. So used to being miserable. I know there’s going to be more to the treatment of this miserable condition, but holy heck this is actually helping. 😭 I may never feel like my old self again, but I’m starting to believe I can at least feel closer than I have.

Definitely the alcohol too. I made the mistake of having one glass of wine at dinner recently and ohhh no. That did not go well. I lived off caffeine for a long time because it helped my adhd. It just suddenly changed from one day to the next and I was devastated. I spent months not knowing what to do with myself in the morning. I’ve always had a pretty healthy diet but all my favorite vices became the energy in a second. I’m already planning the 4th of July holiday party with my family…I’ve been looking for good non alcoholic alternatives. Thinking about trying some of the GHC and lions mane drinks but have a feeling I may be disappointed.

I have some quirks like that too. Moving my right eye the wrong way gives me little electrical zaps. I also do these super weird sneezes is sex even crossed my mind (tmi sorry 🤢)

So happy for you! Very encouraging. I’m heading to the pharmacy now 🤞🏻

It started on my cheeks and spread to my chin and chest. My cheeks and nose are always red but the rash gets bigger and smaller from time to time and no clue why. Doctor never had an explanation. At first it was mistaken for lupus