The neuropathy is terrible, my feet are on fire, and feels like a hot poker is jabbing me in my right elbow and my right lower back. Im soo fatigued but can't sleep.
Im freezing, temp is 95.0. Tremors are so bad can't make hot tea. Just went to take my medicines and i need to reorder all supplements but have NO money.
Then the mail came: the LA State Board of Nursing sent me a demand letter to get all of my prescription history and medical records I can't even make sense of what they are saying,
I tried to call them and can't talk to well but explained I'm not working and have chronic Lyme and they want me to go "inactive". this is devastating I have been a nurse since 1984. I don't want ti do this
AND also in the mail is a letter from Social Security saying they have scheduled me to see a neurologist in AUGUST. I just saw my own neurologist in May and am suppose to see my Lyme doctor next week.
I have gained 17 pounds. It's an effort just to shower maybe 3 times a week..I can't take this anymore, how do you go on physically, mentally, financially? The government helps ALL of these other people but me who has worked since i was 15 and full time as a nurse in big positions from 1984 till May 2016 (tick in April 2016) get nothing.
So low
Posts: 86 | From LA | Registered: Jul 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
So sorry for you.
I have no answers for you.
It is so frustrating that we lose such large blocks of time.
We try so hard to get well. The sufferring is unbearable.
We loose so much, our independence, our livelihoods, our savings, our friends, and more.
I just pray it will eventually get better for all of us.
So cry when you need to. Sleep when you have to. Get mad when you ve had enough. Fight when you are able. You are not alone. . .
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I believe in breaking it down, what's hitting us - first of all, I see you describing pain.
I'm a great believer in getting the physical pain level down. Whatever you can discover to take down the pain level is real important to do. Sometimes it takes some figuring out how that's going to happen.
Believe it or not, several of us here are watching this daily free online summit program on medical cannabis - the link is in Tincup's thread very close to yours here, about the Sacred Plant summit.
In it, we are learning that medical cannabis can reduce pain, including nerve pain. I think they're talking about Lyme patients even getting their pain level down with this.
So I suggest you watch - they're on the 3rd day now of a week's program.
2nd, re money, is there anyone in your life you can borrow some from? Or reach out in your community to any do-good orgs?
Re work, lots of Lyme patients lose work and have to make other arrangements. Not sure what your status is here re disability coverage - do you get any coverage through work?
If you're going to have to go the Social Security route, it's better to talk with a disability lawyer - we can help you with referrals if that's the situation -
When life throws a lot at you, I suggest you pace yourself - you don't have to jump just because they're demanding all this info from you - you can space it out, maybe even invite a friend over to help with the paperwork?
One step at a time, and be good to yourself -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thank you all for your support, advice and knowledge. I don't no what I would do without this site
Posts: 86 | From LA | Registered: Jul 2016
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posted
So sorry you are going through this. This terrible insidious disease takes such a toll on everything and everyone! Please know you are not alone.
I know I have given you the following information before, but am repeating it so you can get help.
Here is a link found on Lymenet for "Financial Help and Other Information":
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online www.klove.com or on these FM stations in Louisiana:
Alexandria (KLXA) 89.9 Baton Rouge (WBKL) 92.7
Bunkie 106.3 Lafayette (KIKL) 90.9
Lake Charles (KRLR) 89.1 Leesville - DeRidder (KLXN) 104.1
Natchitoches (KLNQ) 106.5 New Orleans (KNOL) 107.5 Shreveport (KLHV) 88.5
Blessings and prayers to/for you. Just take one day at a time.
Posts: 8981 | From Illinois | Registered: May 2006
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