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| ·Remembering Leslie Wermers. One year ago today. | 2009-11-02 20:10:50 | | ·Lyme disease patients mourn passing of well known doctor | 2009-07-01 04:00:00 | | ·All she lost: My sister's battle with Lyme disease | 2009-05-19 04:00:00 | | ·Laura Treanor, 19, Lyme disease not ruled as cause of death | 2009-05-07 04:00:00 | | ·Lila Star Smith Harms, 25, dies from complications of Lyme disease | 2009-05-05 04:00:00 | | ·Lyme Disease Patients Loses a Hero and Friend | 2008-11-16 19:57:38 | | ·Nancy L. (Scully) Strayer: March 20, 1946 - March 12, 2008 | 2008-04-12 04:00:00 | | ·Bite from tick on holiday led to death leap | 2008-04-11 06:49:39 | | ·Rugby great, Mike Gregory, loses his battle with Lyme disease | 2007-11-24 23:51:00 | | ·Missouri teen, 15, dies from Ehrlichiosis | 2007-09-04 04:00:00 | | ·Steven F. Wells, 45, dies after battle with Lyme disease and ALS | 2007-08-14 07:03:39 | | ·Bruno C. Malvezzi | 2007-07-31 21:06:47 | | ·In loving memory of Dr. Edward McNeil | 2007-07-24 19:45:00 | | ·Lyme disease is a growing problem, Britteny Gallgher, Kansas City, MO | 2007-05-24 04:10:00 | | ·Lyme Disease Skyrockets In Maryland | 2007-05-23 04:00:00 | | ·C. Peter Thomas, 46; Sound Engineer | 2007-05-21 04:00:00 | | ·Jimmy Duarte, gifted musician, charismatic islander, dies at 70 | 2007-05-17 15:12:03 | | ·Obituary: Lyme Disease Advocate Karen Johnson ''Rose'' Rose, 1947 - 2007 | 2007-04-30 22:50:17 | | ·BETH'S QUEST: Family crusades against Lyme disease | 2007-04-29 04:00:00 | | ·Tick kit distribution aimed at heading off Lyme disease | 2007-04-28 12:40:00 | | ·Letter to the Editor: In Memory of Lyme Advocate ''Rose'' | 2007-04-26 11:00:03 | | ·Lyme Advocate ''Rose'' Succumbs to Lyme Disease | 2007-04-19 18:25:19 | | ·Body of Missing Woman with Lyme Disease Found | 2007-04-14 21:46:32 | | ·Michael Coers won Pulitzer Prize | 2007-03-21 10:00:43 | | ·E STREETER IN LYME 'SUICIDE' | 2007-03-19 12:33:30 | | ·Lost to Lyme Lyme disease facts | 2007-03-19 04:00:00 | | ·Musician remembered as battler against Lyme disease | 2007-03-19 04:05:00 | | ·Maine Musician Bill Chinnock Dies | 2007-03-08 13:45:18 | | ·Obituary - Eric von Schmidt - Singer and painter was in Dylan's circle | 2007-02-27 11:00:00 | | ·JAMES P. KOCH | 2007-02-22 00:53:49 | | ·Andrew Spielman, 76, Expert on Insect-Borne Diseases, Dies | 2006-12-26 04:00:00 | | ·Martin Frank Dumke | 2006-11-29 04:00:00 | | ·Bill Reynolds: For QB Coen, tragedy lies beneath the surface | 2006-10-29 04:05:00 | | ·Coen plays on without No. 1 fan | 2006-10-17 04:00:00 | | ·Librarian was dedicated to students, family | 2006-09-19 17:02:58 | | ·TORMENT OF BRAIN BUG PROF - Alasdair Crockett | 2006-09-19 13:43:35 | | ·Widow of Lyme disease victim appeals for help | 2006-09-18 22:44:57 | | ·Professor commits suicide after catching dementia from tick bite | 2006-09-17 22:17:12 | | ·Tick talk: Family blames member's death on tickborne illness | 2006-08-21 04:00:00 | | ·Death of York PA area doctor due to Lyme and ALS | 2006-04-29 20:40:02 | | ·Emmy-winner Scott Brazil dies of ALS and Lyme disease at 50 | 2006-04-22 11:37:59 | | ·Kym Cooper- Dead Woman's Own Letter Tells Her Lyme Disease Story | 2006-02-05 14:08:53 | | ·Kym Cooper - Worn down by Lyme | 2006-01-22 01:56:26 | | ·Kym Cooper, 1968-2006, After long battle with Lyme disease | 2006-01-19 13:51:02 | | ·Tribe leader Francis mourned | 2006-01-14 18:22:58 | | ·Easton mourns former selectman after fatal accident | 2005-12-17 13:04:17 | | ·Educator, union leader dies from complications of Lyme disease | 2005-12-08 09:25:32 | | ·'A TERRIBLE WAY TO GO' | 2005-10-22 14:39:56 | | ·Leo Bogart, R.I.P. (1921-2005) | 2005-10-21 15:55:28 | | ·Leo Bogart, 84, Sociologist Who Studied Role of Media in Culture, Is Dead | 2005-10-21 15:46:44 | | ·Passages: Pat Pepper | 2005-10-10 01:11:11 | | ·Man loses battle with Lyme disease | 2005-10-09 10:37:43 |
[ Read Obituaries ] | |
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Hope or hopeless? Posted on: 07-27-2010 @ 05:49 pm |
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I don't know anymore. This is my first posting. For a long time, I knew something wasn't quite right, but the docs said it was just arthritis. That's the beginning of learning not to trust them. They know a lot, just not everything. When I was finally diagnosed with lyme, I had to learn to play two new games. One was how to talk with medics who don't believe in chronic lyme and work around them to get help for symptoms - even though the meds are temporary. The other was learn as much as I could about lyme disease. How can you survive it when the only help is internet guidance clues? I've learned the game pretty well and can play it some days, not others. On the days that are down and outers, it's best to go nowhere, see no one, and avoid all stress. That way I don't hurt someone's feelings, say or do something regrettable, and hopefully can sleep it off.
Right now, I'm breaking my rule - talking on a down day. I can't tell if hope still lies ahead or if nothing will ever change. The reason is the next three weeks involve traveling home to help with family care. That's stress. I'm trying to deal with it. Sometimes talking helps. That's why I'm writing this which brings me back to the original question. One thing I know lyme is cyclical. There has to be some value in understanding that much. |
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Last updated on 07-27-2010 @ 05:49 pm
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Comment By: lymielizzie (Posted on 07-28-2010 @ 05:38 pm)
Comment: Hi Ginnia, welcome.
I have been battling lyme disease for 9 years and for me LB is a good and safe place to write your feelings whether you are having a good or bad day. We all understand and are in the same boat with you. You are not alone in the suffering and anguish this awful disease brings on.
You will learn a lot as you go through this journey. Obviously you are in lyme 101 right now but there is so much more to learn. Mainly about yourself. What you can and can't do from day to day, moment to moment. Who you can tolerate to be around and who you can't. What you can eat and what you can't etc... the list is long but important.
My world has gotten smaller but its so much better since I have learned to say no to the things that make me feel sicker and yes to the things that help me feel better, thus I am able to cope and endure better now.
Listen to your gut instincts about stress. Avoid what you can, people will adjust. You can't be worried about hurting everybody feelings. If they are good friends they will understand. Your family should be 100% supportive and you need to let them know what the disease is doing to you. My family does not guilt me because I do not do holidays with them anymore. My husbands family sometimes try to guilt me but I do not care what they think anymore. If they are not going to understand and be supportive that's their problem. However, they too are adjusting to my need to be at home. They have no choice but to adjust. I'm driving the bus now.
My lyme survival tools:
Say no to what you can't do any longer. Set new boundaries for yourself. "No" is a good start with no guilt attached to it. I know its easier said than done but with couragious practice you will get better and better and they will adjust.
Eat really well and get as much sleep as you can.
Get a tad of exercise daily.
Simplify what you can simplify.
See a psychologist if you can. Mine has been a true God-send. Find one you really like and that when you leave the session you feel much better. Don't be afraid to shop around until you find the right one for you.
If you say something regrettable or hurtful, don't be hard on yourself. It takes one minute to offer a sincere apology. Having lyme can really play havoc on our moods and or self control. Its not you, its the disease and mental symptoms are real and a genuine side effect of lyme disease.
If your in pain, get out of pain. If you need an anti anxiety pill take it, no guilt time again!
Come back and write your feelings out here or journal. I prefer to do it here than to journal. LB is my journal, it has been my safe place for many years.
Pray. My daily time with God has been KEY in coping and enduring. I read a powerful daily devotional book called Streams in the Desert. I read a psalm or a scripture than pray like crazy! :-)
Feel free to send me a private message anytime. I am more than happy to answer any questions or concerns you have. Hang in there!!
Betty (Lizzie)
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Comment By: carold (Posted on 08-03-2010 @ 05:45 pm)
Comment: Hi, Lizzie has given you the best advice. Find a Lyme doctor and take the medications and supplements. The frustrating part about lyme disease is that it takes a long time to get to a place of feeling good and functioning so have a lot of patience. There is no cure yet but you can get your life back probably with limitations. Hang in there. Carol
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