Maureen Gosz
Forum Replies Created
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The Packers, Milwaukee Bucks, & the Badgers. I like the Brewers, but I can’t watch baseball! I really enjoy watching horse racing also. That’s on my bucket list, to see the Kentucky derby!
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Don’t make plans.
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My husband and I have told people we know about the gummies & gel, but there is such a stygma about using it. Alot of people think that taking 1 gummy is going to do it for them. You have to be consistent and take them every day. We have been using for years now. My husband, with such a bad back, takes 2 every night. I take 3 every night, and we have been doing this for years. You also have to experiment, if one doesn’t seem to do it, then move up to 2, ect.
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To John P.
Good luck! I hope it works for you! -
My husband and I both use a cbd roll on. The place we go to has 500 mg. or 1500 mg. It’s amazing. I have severe pain in my neck, and my husband has a bad back. It’s amazing! It works throughout the day, no side effects, and we take the gummies at night. My husband’s back was so bad, it would drop him to his knees. He did go to a chiropractor and has disc degeneration. After using the cbd gel and gummies, he hasn’t had any problems in years. Granted he pays close attention to what he does, but what a godsend! My neck gets so bad at times, and the gel is amazing. Even with coughing spells that I get, my ribs & chest get so sore, I put the gel on.
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In the past 5 years, I have had my throat dilated twice. I ended up this last time, to find out I had an infection in my esophagus. I was constantly clearing my throat and coughing. So, after 21 days of meds, the coughing and throat clearing hasn’t gone away. Needless to say, swallowing is getting very difficult. They took a chest x-ray, and told me that I have hyperinflation of the lungs and respiratory effort. Whatever that means. So, I go see another doctor for this on Tuesday, and go for a swallow study on Thursday. It just seems to be a never ending process. That’s why they have revolving doors on the clinics!!
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I take the cbd gummies or the delta 8 chocolate bar. Only in the evening though. It helps take the pain away in my legs and sleep a little better. I’ll drink a wine in the evening occasionally, but I usually add white soda to it. My doctors haven’t said anything about my use of it.
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Greetings!
It has just gotten ridiculously costly. Inflation hasn’t helped any. The cost of meds & Inflation, more is coming out than what’s going into the bank.
It is getting very stressful. I did do the IVIG until my insurance company decided they weren’t going to pay for it anymore. It costed $25,000 a month for those treatments. I did it for 4 months, and then stopped. I really didn’t notice any difference being on it. I could never afford it. It just frustrates me when a person works your whole life, and pays for insurance, and when you really need it, they just send you a letter saying that they aren’t going to pay. I never was a person that would run to the dr for any little thing. I’m 61 & my husband is 63. So much for enjoying your retirement years. I’m still working, it’s not easy, but I have to. My retirement fund that I did have is gone. I just wish this government would start taking care of the citizens that live here, & not everyone else. -
What do you look up to find out what drugs or supplements are bad for MG?
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At 60 years old my lifes passions have changed. I was working with my horse to do endurance riding, when MG crept up on me. Being misdiagnosed for years ,I was finally diagnosed 2 years ago. Needless to say, I had to get rid of my animals.
I have always had a passion for flower gardening, which has expanded to many flower beds. I cannot do what I did in the past, being on my hands & knees for hours, digging, planting, ect…but I take lots of breaks. I cannot work at them all, so I work on one a day, or maybe longer. When I’m in my gardens, that’s all that’s on my mind at the time. It lets me escape from my disease for a time.
Also, living on a farm, people randomly dump their animals. Right now we have a big kitty that adopted us! He is a sweetheart, and an amazing mouser! He drops his kills for us at the back door! After our dog died, it’s been hard to try & get another, and then this guy shows up! God works in mysterious ways! -
Omg! Definitely low pressure systems. We are in a rut right now with rain, rain, rain! I feel like I got hit by a dump truck!
The heat & humidity are also major factors in how I feel.
Kelley, you are correct with indoor temps also. It gets extremely warm where I work,& it sure takes a toll. I wear a cooling scarf, but will have to check out the vest. -
Hello Amy, thanks for the info. I am in the process looking for a new eye dr. There isn’t a neuro-opthalmologist around here, so a regular one will have to do.
Thanks again,
Maureen -
Ari, sorry to hear about another crisis. Thank you for the tip on the eye mask.
What happens with an occular crash? -
My eyes have been progressively getting worse. I can barely keep them open. They are red, swollen, painful burning, & feel like there is a ton of grit in them all the time. Occasionally I have double vision, it is more blurry than anything,& I do wear glasses. I do cold compresses which give me relief for a short time. Does anyone else have these symptoms also?
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Anita, I love the analogy you gave of the energy of a sedated sloth! So true! Some days the fatigue is so bad, I could just drop where I stand.
I am 60,& was diagnosed in 2020. I grew up on a farm, & have a hobby farm, now, minus the animals. It just devastated me to get rid of my animals, especially my horse. It was getting to the point that I couldn’t even brush my horse without getting exhausted. Not to mention all the heavy lifting. I knew something was going on, other than my rheumatologist telling me it was arthritis! She finally referred me to a neurologist, who figured out it was MG.
Since diagnosed things surely went downhill. The fatigue, droopy eyes, painful legs, the throat with swallowing & talking, painful muscles around the ribs, ect..
I only work every other day, because it takes a day to recover from the day before! I work in health care, which has been bad this last year & a half. Being on immunosuppressants really had me on edge. My boss has been great, and gives me jobs where I don’t have to be around too many people.
But like so many of you have commented, about waiting to retire & do things you had planned. My husband is retired, & I carry the insurance, so I have to work till 65.
We enjoy car shows & swap meets, but those are attended depending on my symptoms. I tell my husband to go, if I feel I can’t.
Things have changed, that’s for sure. Try to have a good outlook, & just be thankful to wake up to another brand new day.
Take care everyone! -
Ok,followed what you said, but I do not see the boxes that you mention, friend, public or private message. 🤔
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I feel dumb. Did what you said, but still can’t find it. I’m done. I’ll just keep reading these responses as they come through. Thanks.
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I don’t have a clue how to private message. Help.
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Thanks! I’ll have to check that out.
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I’ve never zoomed. I don’t have a computer, just my phone. I’m not a tech person!
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Delta 8 THC is a psychoactive compound found in the cannabis plant. It has a slightly different chemical structure that makes it a lot less potent than true cannabis. It takes pain away, & gives relaxation. I take it in the evenings only. It seems to be the only thing that has worked for me. Daily I take 125mg of azathioprine, 300mg Mestinon, & 30mg of prednisone, for 2 years now, & do not notice any changes, not for the better. It gets pretty tiresome taking these drugs, with no effects whatsoever. I did do the IVIG also, with no results.
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What is SOB?
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My leg pain isn’t cramps, though occasionally I do get those, it’s intense burning & pain. I can sleep for about 4 hours, with the delta 8, but wake up with the burning again. My legs are pretty much in pain all the time. I’m in Wisconsin, so I was out sweeping our deck from snow yesterday afternoon. Then went & filled up my bird feeders, when I got intense weakness in my arms & legs. I got the shakes so bad, & weak, I’m like, omg, I can’t fall down out here, it’s below zero! I finally made it in the house, & collapsed in my chair. I couldn’t even lift my arms! That was a first for me with the arms. Pretty scary.
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Thanks Jodi! I was feeling pretty dumb with all the help people were giving me, & I still couldn’t figure it out! I don’t have a computer, just the phone. Thanks again! 😊