posted
I have been battling this for two years now. Have to sell everything and move in with my parents. I can no longer drive due to my eyesight. Been on disability for two years now.
I keep going over everything in my mind, what could be different. Sadly, I reach the same conclusion that nothing would be changed.
I probably was bitten sitting on my porch outside my apt. Did not see a tick, nor had a rash or was sympotamtic for a year. The tick that bit me had lyme, babs, bart, erchliosis, epstein barr virus and who knows what elses. Even if I knew then what I know now, I still would have had probllems. Back then I wouldnt have know that a few weeks of treatment wouldn't solve the problem either.
Very bored and discouraged that lyme has taken so much away from me. My days are very long and lonely. Have gotten to be an expert on watching tv and just doing very simple things. My life is no where where it used to be.
Thanks everyone- just needed to vent.
Posts: 719 | From Delaware | Registered: Jan 2006
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Cobweb
Unregistered
posted
Hey Iceskater- I started a reply , then went looking for a picture, and my screen froze up, and now I can't find my original reply. Really I couldn't find your post either, so i looked up recent posts in your profile-and voila!
I'm going to send this before I go looking for a picture again. I feel for you. My life was going in such a Good Orderly Direction-then BAM-the dominoes started to fall.
I think of you everytime my eyes ache-wondering, just wondering what's ahead. Meanwhile I'm turning into a TV junkie,too.Maybe we're just watching too much and it's not lyme? JK
I do a lot of American Movie Classics.
Take Care-What appears to be the end, may just be a new beginning.
posted
As much as I've whined lately, I don't know that I should write. But, I still want to encourage you. I'm sorry you feel so bad. I do want to encourage you to do all that you can do until you just can't. I think I've been battling this for years ... many years, but it has really gotten bad over the last 5 or 6. I am still working ... but it's not easy. I keep doing things, mainly just because I'm expected to do so (no one believes me anyway), but some of it helps me to keep going.
I'm NOT saying you should be working ... only you know if you can. I don't feel I should be now, but am expected to do so. If I had my choice, I would take a walk everyday or go to a gym and do as much as I could do. Then, occupy my mind with things like genealogy or something. I'm finding, testing, games, etc keep my mind going. Sometimes it's not great, but I try to exercise it anyway. And, the less I do, the worse I feel, and the less I can do. So, I do try to find the line of all I can do, and not going above that because it can set me back. But, trying not to go below it, either, otherwise I get worse gradually.
Find something you LOVE to do, and do it. Then, find something else, and do it. Posts: 65 | From Burbank, CA (recent) from Midwest | Registered: Apr 2007
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posted
The sad things are I do have a very good LLMD. We have been battling this for two years coinfections and all. I am barely holding ground.
My eyesight is 20/400 uncorrected and damage also to the optic nerves. I can not even see the water in the shower when my lenses are out- I can only feel it. I sleep with my lenses in everything is grey and fuzzy. I cant even read or see the computer screen without my lenses. Very close to legally blind now.
It would be a God sned if I could drive or work. I would do it in a heartbeat.
Thanks for the encouragement everyone.
Posts: 719 | From Delaware | Registered: Jan 2006
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bettyg
Unregistered
posted
skater, my dear online friend, i hope you felt that juicy kiss i just laid on you!
seriously, so sorry to read how sad and lonely you are since you can't drive, work, and almost legally blind.
do you paint? a former co-worker of hubby's does...same situation eye wise as you; no lyme. she paintgs gorgeous house scenes...in city or farm ones. hubby had her paint home after we bought it, then we had her paint my family's century farm house/buildings.
we gave the farm ones to my folks one year for their anniversary. i wrapped it in the funnies paper. dad opens it and says, "WHOSE FARM IS THIS"! EXCEPT for a big tree by side of house, it was perfect as well as the huge barn, etc. whose farm? dad, i could have clobbered you on that one! we got it back when they got more aerial photos of farm, so we enjoy both in our living room.
with your RN background, you can be a LYME ADVOCATE and email/call your local politicians/governor/senators/house rep.
you could do speeches around town at the various orgs, etc.
too bad you couldn't get someone to give you an 1-800 phone line, and you could be our, "DEAR ICESKATER" people call for advise on medical things that an RN would know.... how's that grab you skater?
working w/health dept. to get LYME books into the public librariess, etc.
i watch a lot of cspan late at night after pc when i eat my nightly popcorn.
hey, i something 2 mornings ago on HEALTH COMMITTEE headed by iowa's TOM HARKIN with INFECTIOUS DIRECTOR, NIH. i watched it for 1.5 hours and they wer talking BUDGET FUNDING, and various diseases, came out.
nothing about LYME disease. they meet again in 2 weeks! during the time i watched only 2 people from committee there! harkin and 1 other who'd leave to vote and someone else would come in for short amount of tume.
how abour our writing HARKIN'S HEALTH COMMITTEE MEMBERS AND ADDRESSING LYME DISEASE AND FUNDING! see what infectious disease director says about it, etc .
wisc. author, pj langhoff, sent her 1st lyme book about all her court hearings, etc. to harkin's iowa office last year. i had called harkin's office for other stuff recently, and then asked if he ever received it and to leave harkin a message. last time pj and i talked, she NEVER even received a thank you back!
SEN. SCHUMER, NY, was bitten ... let's hit while the iron is hot!
what are your thoughts skater/OTHERS?
actually i will copy/paste this part in activism asking for input!
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I am so sorry you are going through all this. I agree that keeping your mind active is very important.
There are tons of wonderful books on tape that you could listen to. They are available free at your local library. Lots of good music to hear that is available there as well.
Learn to do something you have never done before -something involving hands-on activity. Maybe knitting or baking.
Volunteer to make cookies for some organization that could use your help - say local food project or church events. And knitting is such great therapy. It is like solving a puzzle while you are making something of use.
Getting exercise and fresh air and some sunshine when you can find it is vital. Set goals for yourself - walk for 10 minutes out and then 10 minutes back, then stretch it by a couple of minutes each week - if you can. Do a lot of deep breathing and stretching if you can.
That is a lot of advice from someone who can really empathize with the way you feel. I have been through a lot of what you are experiencing. It takes great effort to make yourself do anything sometimes, but you just have to do it. Just a small accomplishment each day helps a lot.
Make a to-do list every day. The first item should be "make a list." You can check that one off when you have finished the list - and you have accomplished something today already.
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Iceskater- It's so hard to go through this. I am facing too what I am going to do. I'm losing everything. Trying to work again. And it just sucks. Every week something is getting disconnected! It's not fair to my kids. My Mom keeps sayng to come stay with her. But what about my life? I have two dogs, three cats, a bunny and two teenagers still at home. I can't just move in with someoe else. But this disease just takes everything away. But I guess jsut get the rest you need while at your Moms. I truly hope someone will find a treatment that really works for all of us and that doesn't take two or three years to start feeling better...
Cobweb, So that's what a Lymee looks like. ANd people say we all look so healthy?! LOL great artwork.
posted
Skater, So sorry you're having such a tough time right now. You've been given lots of good suggestions, but I know how difficult it is to start something new. When you're having one of your better days, then maybe you can give it a try.
A short walk would be a good beginning....helps increase the oxygen in the body (which the spirochetes hate) and as you're able to exercise more, it can raise the body temperature (another thing the chetes hate).
I hope things start to improve real soon!!
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