Maureen Gosz
Forum Replies Created
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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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Thank you ladies for the support. I am one that does what the doctor says, but now I see that you have to be an advocate for your own health. I won’t just sit there and say ok anymore. It’s really hard to find a good doctor. I’m going on my 3rd primary care doctor. I see her at the end of this month.
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Thank you Cyndi!
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I also am seronegative. It seems since I’ve been diagnosed in 2020, it seems I’ve been pretty much forgotten in a corner. My dr. told me he was leaving in November. He set up for me to see another dr. in March. So,he always did blood test every month because of the azathioprine. Nothing since November.He would usually adjust the meds,& talk with me, now nothing. My legs are so painful, I can’t talk much, or get excited when I talk, then I start losing my voice & cough. The fatigue is overwhelming at times, I just hope it’s not a day that I am working. I need toothpicks for my eyes, at least cold compresses help. The only thing that seems to help me with the leg pain is Delta 8, and I can only take that at night, because it makes me drowsy, which also helps with the insomnia!
It just seems weird talking about this, because I don’t talk about this disease to anyone. Yes, my family knows, but I don’t go into details, because people don’t really understand how you feel. My husband still keeps telling me to take Tylenol or ibuprofen for the pain. My boss knows also, so if I’m having a bad day I can leave. I always was an upbeat person, but it’s getting harder to be. -
I love watching all of the Law & Orders, Chicago Fire, All Creatures Great & Small, which is only on it’s 2nd season, but it’s wonderful. I ended up buying the complete Duck Dynasty. When I am feeling my worst,the Duck Dynasty family really makes me laugh!
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When I was doing the treatments, before I arrived they told me to take 1 benadril,& 2 Tylenol. It usually took around 3 hrs. Every 30 minutes they monitored me. I did have the chills, nausea & fatigue. I really didn’t notice any significant improvement. I did these 2 days in a row.
Also, my insurance didn’t deem these medically necessary, even with my deductible met, I had to pay a significant amount. For 2 days of treatments, it costed $28,000. Needless to say, there’s no way I could do this. -
Same here! I love being outside. We live on a hobby farm, which sadly I don’t have my horses & goats anymore, but I do have a large number of flower beds,that I will not give up.They are all mulched so I don’t have to worry about too much weeding. I pick one a day,to work in. Checking to see if deer or bunnies chewed anything, for insects, and normal upkeep. I have my phone on me always for taking pics of butterflies, birds,amphibians. When I am out in nature, there is nothing else in my mind,not even my disease. But,once I get up from being down on the ground, whew! So,I just go & rest for about an hour or so. I do pay for it in the evening & the next day, but, I still enjoy it. In the winter, I can look back at all the pics I took, and think about how much enjoyment it gives me. I also look at catalogs,& on my phone for new flowers & plants for the next year! My husband makes yard art for me, as long as I can keep coming up with ideas! I also love having the wild birds around. Living in the woods, there is always plenty of wildlife to enjoy.There is nothing like nature to heal the soul.
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I have never been a big person. Being on prednisone, azathioprine & mestinon, I was 115,& now am 108. I have lost taste for alot of foods. I always was a big breakfast person, now I can barely eat it. Lost the taste for coffee, bacon & eggs. I eat very small portions. I make meals everyday, it smells delish, but when it comes time to eat, I lose my appetite. My husband yells at me to eat, but I can’t force myself, & then throw up. I use to be a big snacker, & barely eat snacks anymore.
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I was seeing a rheumatologist for years, who told me it was fibromyalgia & arthritis. Every time I went to see her, I was getting worse & worse. I have a hobby farm,& it was getting more & more difficult to do my chores,& working 8 hour days. It was getting to the point that I couldn’t even brush my horse without getting exhausted. Not to mention that work was getting more exhausting. She finally referred me to a neurologist. He did a few simple tests to check my strength, speech & eyes. He also did a blood test, even though I’m one that doesn’t have the antibodies, he told me it was MG. So, I went ALL these years misdiagnosed. I did have to get rid of my animals, because it was just getting too hard to handle the bales of hay & bedding & lugging water & manure.
Where I work, they have really worked with me, so I can keep my job. I can’t do full time, I have dropped down to 3 days a week.