[shawna-barnes]

I am a stubborn, pig-headed individual. I do get VA Disability. But I also have my own businessES. Yes..plural. Because I don’t know how to just sit and be idle. I have a website design business, a shared workspace/tech center, and I help my husband with the backend/admin for his gym.

And I write for MG News, am on a couple of different boards. and and and

I’m still trying to find a good balance. I’m getting closer to figuring out what that looks like for me and delegating a lot of the menial “crap” to my two part time ladies I have that work for me.

There is still a lot of butt-in-chair time and I wish I could be more active and be able to get more than 2,500 steps in on a regular basis. Maybe some day.

[Cheryl]

I had to stop nursing 2016,2017 fell breaking ankle and needing help to do white dove release business. Blurred vision and eye pain sidelined writing. Finally got disability 2020 when was at miserable low.2021 demanded trial of mestinon despite seroneg and started feeling better and slowly could do more. Still mostly in the house,hair is longer,can walk further with cane,upright walker lets that happen without back,hip pain. Still have to laydown with bipap in afternoon. Must be in bed by 2100 when exhaustion makes balance go.

Basically not well

[Leigh]

Hello Cheryl,

I definitely feel your pain. I stopped nursing at the end of 2021. I was diagnosed at the end of 2014 & after quitting jobs and taking breaks, moving to less demanding positions and part-time, I just could not function. The stress alone was flaring my symptoms even more than the physical work. I like to hope that I may get back to some type of nursing but it is not looking promising! I am in my early 40’s & will soon have to renew my license. What did you do in regards to yours? Are you able to still renew to keep it active or did you put it in an inactive state? I am not ready to give it up yet but not sure if I will be allowed renewal. I am in Texas. It took me many years to allow myself to slow down & rest. In the last year I feel like I have slowed down too much! I stay at home most days. Either I don’t have the energy or I am not comfortable driving. I need help with grocery shopping but I am getting some of my strength back in mobility. I had two surgeries in 2024. I feel like I can’t do any hobbies unless it’s a good day. Reading wrecks havoc on my eyes as well as tv for long. I like to do crafts and paint but hand dexterity is usually a problem. After I do normal daily activities I am too fatigued for much else. I have tried to find the joy in little things. It sure helps your mental health.

[shawna-barnes]

What about becoming an instructor? Would that allow you to continue with your nursing career and be less taxing?

I was a medic in the army and miss it every day. But I also have a seizure disorder and cervical dystonia, so when I was medically retired from the army I said good bye to the medical field. I’ve been able to find other things to keep me busy that allows for more flexibility in my day.

[Leigh]

Hello Shawna

That is a great suggestion however would need a masters degree and I have two associates and a bachelors. I have thought about going back to school but in the last couple years my mental capacity has shrunk. I keep reminding myself I used to be smart! Brain fog and short term memory is a challenge. My neurologist says that MG doesn’t affect the brain but I beg to differ. Doing a masters program would be much more challenging & Im worried the stress may make things worse. My fear is spending $20-40K and then not being able to work to make it worthwhile. It’s always in the back of my head though.

[Cheryl]

Hi Leigh,

Thank you for writing! I have felt so alone in this loss. The last CPR recert was a pity pass,repetition wasn’t good. In 2016 had switched to nursing home from ob and nurse patients were trying to diagnose me, it was embarrassing to need to walk pushing a wheelchair,to have unstable hospice pt concerned about my balance. Like you eyes wonky, at times couldn’t tell a 3,6,8 apart, breathing was hard at times and talking impossible. When renewal came put license inactive after39 yrs after not finding any jobs I could do,the M.D. said should go to assisted living. I went into a 2 yr depression that was made worse by therapist.

I have been wondering if any connection to hep B. I failed to sero convert after 2 series. When moved to tx they demanded a 3rd series,still negative. Continued sero neg for 20 yrs when suddenly sero converted. I am triple sero neg to MG but strong mestinon response. Wonder about other healthcare providers experience.

I am into spinning and knitting but knitting is exhausting and counting stitches is a nightmare,hate frogging or finding I messed up a simple lace…been knitting 45 yrs and losing fluidity is as upsetting as losing my career. Heck,some days too tired to respond to texts or answer phone or carry cat into vet

[Leigh]

Hello Cheryl,

Thank you for replying. I have had a couple times of being partially dependent for care. My husband and two children have helped me through it. They are also the driving force to get up & do things. I am also triple seronegative. I had some more extensive labs done with Athena labs that did show SCN4A was inconclusive. That is for congenital myasthenia. I had a lot of muscle problems as a child but was never taken to the doctor. I doubt back then they would of had a clue anyways. I thought those symptoms were normal so it’s possible mine is congenital. I do believe that the stress of nursing brought it on. I was diagnosed 10 yrs ago but the last 4 yrs have been most difficult & feel like it has been more progressive. Not being able to try some of these new medications is frustrating. I don’t really have any hobbies & friends dwindle when you are always cancelling plans. Taking care of myself and my family is my limit at the moment. I like to craft and build lego when I am up to it. It helps with fine motor skills. Finding support groups with people who truly understand has been helpful for me. Take care. I’m always here for a chat.

[Cheryl]

Hello Leigh,

While ihave found the online groups helpful,they have decreased frequency and if don’t lay dow with bipap beforehand I can’t talk .

Yes,is frustrating not toget better drugs. Was told since not clear evidence it could help,the risk is too great. The fired neuro said is fnd and mestinon is placebo. My feelings still hurt from the gaslighting at the same time was consistently failing to stay upright and do things. Good thing is various people in town have googled MG after meeting me and give support on bad days,give me hurrah on good days.

Blew up on son one night,next day he abruptly left at age 31. Miss him but not his dependency or attitude when feeling bad. Totally contented to be alone with critters. Maybe some day will need him back but feel he needs his own life as much as I do.

Getting tired of knitting handspun yarn into bespoke gifts and people don’t wrar them. Have all the clothes I need and get sad seeing masterpieces in thrift store. Love photography but only so much can display. Friend encouraged me to try gardening. Have learned how very many ways I can fail. Esp since at 6ft ground is so far away,have been stuck in awkward positions debating if I should be unable in 10 minutes,how to explain need to dispatch. Rehabbing this old house is fits and starts. Used to love to travel but last trips were grueling without major problems. Friend with MS has told me she just decided MS doesn’t have her and goes on hikes,trips…course only since she started the new drug.

Really think this was a thing in 2000 for me,had uti treated by cipro and had weakness,blurred vision,fatigue on and off til 2007 had weakly pos tb skin test getting 9 mos of med was told all I felt was normal despite rising liver enzymes and crp. Was forced onto zoloft for flat affect which made everything worse more often. 2012 legs stopped working well everyday,2014 tried to push through near dailyproximal weakness with more caffeine.2016 crying was daily esp when shamed for complaining about simple menopause. Only see sleep md as he writes mestinon. Do you have pcp? Are they only single issue per visit, no physical 10 min visits there?

Thanks for listening,this mess is not what I signed up for. Chloe Atkins. Book about her saga with sero neg mestinon responsive disease is only lifeline I had.

Peace

[Jodi Enders]

Thank you for sharing your experiences so openly. It sounds like you’ve been navigating a really tough journey, and it’s understandable to feel frustrated and overwhelmed sometimes. MG can be a lot to deal with on top of other life problems like the complexities of family dynamics.

It’s also great that you have found solace in your creative pursuits, like knitting, even if you’re feeling disheartened about them not being appreciated as much as you would like.

Gardening can definitely come with its own set of challenges. Yet, it’s admirable that you’re willing to experiment and learn, even if it doesn’t always go as planned.

Remember, you’re not alone in this. Sharing these experiences can be a source of strength for those facing similar struggles. Please continue to take care of yourself and reach out whenever you need to share or vent.

– Jodi, Team Member

[Cheryl]

Hi Shawna,

Nursing instructors must have minimum of MSN with progress to PHD in nursing. Iwanted to do public health/sociology. I know nursing instructors who have to work side agency jobs to survive and underwater in school loans. Not for me.

Plus that there is no nursing job that accomodates flares,diarrhea,weakness. In fact many health businesses don’t want graying over 50 nurses interfacing with public…wrong image.not to mention,mandatory overtime or being assigned different duties that compromise even healthy nurses.

Nursing could be much more humane and reform is exhausting and slow…been at it since 1980!

[shawna-barnes]

That’s unfortunate. I wish there was a way that you could share your vast knowledge with those who could benefit from it.

[Leigh]

I’m planning to volunteer when I get a little stronger. The commitment will be less demanding & stressful than being employed. Then I will go from there based on how it goes.