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    Old 05-09-2006, 06:49 AM   #16
    Betterdaysforme
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    Re: Is recovery a roller coaster?

    Hi guys,

    A couple of years ago I was reading an article in the paper about a woman who had West Nile virus. Somebody asked her when she got better. Her response was that she had changed the way she did normal things so much and gotten used to this new way that she really hadn't even noticed she had gotten better. I guess it was just so gradual. Interesting to say the least. She is cured now though.

    Maureen

     
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    Old 05-09-2006, 11:59 PM   #17
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    Re: Is recovery a roller coaster?

    Oh my all of you...there were too many of you lovely people I have been reading long enough to feel like I know but have only posted recently and then a big setback has kept me off the board the last several days...I, too, am almost approaching the two year mark though I only got my "official" dx last August a few weeks before Katrina hit...I was already far into the "neuro-lyme" phase...cognitively, psychiatrically, and neurologically with all the trimmings like 6 separate incidents of Bells Palsy...and then all the physical symptoms etc etc...that is not the point of this post...I just had a surgical procedure to get a PICC line in, in the hospital and horrendous...because the 3 doctors working on me in Radiology could no longer find a single usable vein in my arm and the only drug in the treatment since Aug 2005 that has even given me those once-in-a-while days that are like the dawn bursting through...well, that was once I was on Rocephin for months and even then I could only tell I was better because instead of living like one from Dawn of Dead...and doing all the things everyone has mentioned...living in clothes, taking a shower being the highlight of my week, not having the energy to overcome the inertia to do things I love, and not for lack of willpower or the absolute desire to do them.

    And the doctors say nothing but get used to a new way of living...(?) and rest and keep stress down and take these meds that more often than not make you feel worse and and...easy to say, eh? Yes, we have to rejoice at whatever amount of time we have where we feel "ourselves"...doing things we love to do or haven't done...

    When I have a "good" day it is EXACTLY as so many of you before me have talked about! It is my nature, since I did have a rather pesty autoimmune disease before all this throughout the past 20 years, but intermittent and nothing like this...anyway, when things got bad with it...and once it was over a year, more often months...the recovery was the hardest part in that it was all the things you have all described...one or two or eventually more steps forward and then there could be so many backwards...no smooth upward curve of recovery...and no matter how slow, that slow curve always somewhat improving even a tiny bit would be SO encouraging and well, DECENT...i

    No..instead we are teased and tested. I ftry to feel glorious and I do celebrate the occasional day that seems almost like a miracle because I can think clearly, don't feel more than a bit tired and the pain is managable or even barely noticeable...Then, if I have a few of those in a row...only happened a couple of times...I start to imagine I WILL GET better eventually if I keep fighting hard enough. Instead, and I know better, I DO...I am sort of heartbroken...it isn't gone and maybe it is a bit better and it is a roller coaster but how long?

    From marathon running & daily running, teaching Deaf kids science, doing daily yoga, raising a son every other week as a single mom in a city where I am totally alone...without family or real friends, and being a working artist in my spare time...and sleeping 5 or 6 hours...overnight, I became like that wonderfully accurate but horrible imagery of glue...I, too, spent the better part of this illness preDx and post Dx on a couch...barely able to move or do the simplest thing...no longer able to read and I read voraciously...that I have mentioned but then, again the good day comes and I take a shower, do chores, get involved in some project and on the whole do far too much, that I have since found is wonderful that day for my spirit but takes its toll on me in the days to come...

    I know as most of you do, that I could handle the slowest and most painful recovery in the world if I made some tiny tiny progress that was steady or kept some of the things that seem to improve over time...but just when weeks have passed and I feel maybe I can start to hope for that remission my LLMD is sure I will have eventually...not soon but eventually...I feel as though I am right back near the worst times I have had. And I do not have to tell many of you how bad those endless bad days can be.

    Now, when I had had 5 months of IV Rocephin and got treated for one coinfection...I think for a few weeks I was genuinely doing better and if insurance and other problems post Katrina had not gotten in the way and I kept the IV going and was treating the other infections...well, I think I would have seen what so many of you guys spoke about...the slow, almost imperceptable improvement but clear improvement over time.

    Yes, I do agree, it is a roller coaster...but one you cannot really hop off of whenever you get tired of the ride, or bored or you are riding it totally alone or in the rain..or the winter...it just keeps taking you up and down...not everyone, I am sure, but for me and so many other I have identified with here...it seems like that.

    I am lonely, isolated and I don't look as sick as I am to new people who didn't know me when I was well or even 18 months ago, but those that knew me then or years ago are appalled by the change and the real toll this chronic illness has taken in my appearance, I cannot face mirrors very often, and it isn't vanity, I just don't recognize the face of Lyme staring out...again, not that it matters since I rarely go out, BUT, OH I WANT TO...and be part of the world again...and people and work and have more than the couch and meds and abject loneliness and boredom that is unrelenting and even sometimes the good day that makes me remember how it was not so very long ago.

    My goodness, my friends, I didn't mean for this to be a downer and it is...everyone who wrote before me was more upbeat about this hard to deal with topic...so much work for so little return and yet our human spirits SOAR when we have those days and they should be celebrated by us individually and yes with the rest of us here on this board, who see hope in each good day for anyone of us...whether we paint or do loads of laundry or go out to a movie with our kid and get fast food or read a book or take a long walk...sometimes even just getting in a car and being able to drive somewhere...anywhere out of the box.

    I cannot do more than be human and hope as many of you say, that each good day is, indeed, the beginning of many more to come again, even if they are not quite consecutive...and I suppose if you lose that hope totally, well...many of us have been there and that loss of hope is as bad as it gets...because that is a pit that is very hard to mentally struggle out of, especially those of us who have mood disorders with this....

    So, to all of you brave souls who posted here and those reading who are in agreement and know exactly what everyone else is talking about, well...I pray for all of you and I hope that we can rejoice a bit at having better days and maybe periods of time and hope too that eventually, when we have been at the fight long enough...we will be able to do many of things we did "before" we got this unwelcome invader.

    You are all in my best thoughts tonight and every night...I had such a very fine day, relatively speaking, on Sat. My 10 year old son was with me overnight...I cannot care for him every other week, at this point...a great awful sorrow...and I just was so fine. It doesn't feel as though you could geel as bad as before...and you KNOW you can...patterns and all...but it feels as though if you are careful you can...well...I just try, as you all said in far fewer words to not look back...that is excruciating for me...and to simply enjoy those days as thoroughly as I can...and not feel too defeated whenever the morning comes that I cannot move out of bed or whatever...

    I believe for most of you, us...well, it is time and sometimes much longer than we can imagine...but with the right meds for US...and the long enough...we can all enjoy far more better days, even more than the truly bad ones and maybe the bad ones are just less so...but many factors have to be on your side and one that we can control is not letting the human emotion of disappoint get us too far down when the couch and old movies on Turner Classics are the best we can do for days or weeks on end.

    BE GENTLE with yourselves all...(and I did go on tonight) but I wrote almost every day & kept deciding to delete my messages..till I post and they go on and on for needing to talk to you all.

    One other thing...I see the old PICC line thread that went on and on so strong for so long...seemed to abruptly stop a few months ago...Please, does anyone know, is there another one?.Have I missed it or do I need to start another one...?

    This new PICC I have is really different and a monster and I thought I was the expert on mid and PICC lines but I could sure use a support board for round 4 of Rocephin and this giant Frankenstein arm they rigged up for me this time...

    Well...I am going to try to watch this Marx Bros movie and be asleep by 2:30 AM...who could imagine with all the incredible constant fatigue that you could have an impossible time getting anything more than 2 hours of consecutive sleep...without serious medication...ah, the joys of Lyme.

    Chins up...that is, if moving your neck doesn't hurt too much to do it!

    All my best to a very wonderful bunch of folks,
    roni/NICO (see Jules, I love my new name...so did my son, Aaron...)

    SORRY TO ALL THIS WAS A NOVEL...IF YOU LEFT OFF SNOOZING IN THE MIDDLE YOU CAN COME BACK AND READ THE REST AT YOUR LEISURE!

     
    Old 05-10-2006, 06:23 AM   #18
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    Re: Is recovery a roller coaster?

    I have been now four years plus on antibiotics, and up and down I go, almost daily.

    Itís like someone from AA or NA. (I used to be a DJ at dances for these groups.)

    They always tell you to take life in small steps. As small as you have to not to stumble and fall, by making the wall of life look so big, it can't be beat.

    Lyme is like this, but for me in reverse.

    I walk through life, and when a good moment comes, this is what I live for, instead of waiting for the bad days of an addiction. I wait for those few seconds of feeling normal again, that come on some days.

    I suffered neurological damage, and I have many mentel issues. My sound, smell, vision, hearing, all have changed.

    Also the way my mind processes information is different. Sound can cause me to become dizzy, and or send shock waves through my body and mind. Vision changes hourly.

    Some days I just canít get out of bed, but others I can work all day around the house.

    With all said, my roller coast ride is not as deep and high as it was four years ago. My ups and downs have leveled off, into this, being able to live mode.

    What really helps me is keeping my mind working with simple tasks, like Gardening, bass fishing, and doing work around the yard.

    Yes it is a roller coaster, but it has gotten much easier, and to this day I am still approving, but it is slow progress.

    But when I look at from where I came, Canít believe I am fishing and gardening again.

    Very hard disease for me, and many others, but we all are here, speaking, and living. So I guess we are winning spiritually in many ways.

    I believe everything happens for a reason, and for those reasons, we carry onÖ

    Last edited by dealer1111; 05-10-2006 at 06:25 AM.

     
    Old 05-10-2006, 07:11 AM   #19
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    Re: Is recovery a roller coaster?

    Thanks everyone for sharing their comments and thoughts. Lots of reflection for me to do.

    I could feel myself going downhill late yesterday afternoon -
    my face started getting numb, the stomach ache and heartburn started, I stumbled and swerved when I tried to walk, I couldn't keep my eyes open and longed for a nap.

    Oh boy. Here it comes again. Oh Lord I hope I don't get hit with that vomitting again.

    I rescheduled a lunch date for tomorrow. 2 women I work with have suggested we meet for lunch and I want to go so badly! Its such a normal thing to do.

    We were supposed to go last week, but I cancelled becuase I felt bad. I can't cancel again. I don't know them well enough to take that kind of liberty and I'd feel stupid.

    So I'll go and try to remember to walk slowly and hope my stomach doesn't act up until I get home safe.

    I used to know a saying ..... it was something like "A man can hang by his tongue if he knows the duration." To me that means that we could endure just about anything if we knew when the suffering will end.

    I wish all of us could have a steady progression to health and recovery.

     
    Old 05-10-2006, 04:06 PM   #20
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    Re: Is recovery a roller coaster?

    Mickie
    I like you started my downhill Sunday. My feet hands & face started going numb again. Then last night it escalated quickly. My head hurt to lay on it, my ears hurt from the pillow. My muscles would wake me every few minutes saying move, you're hurting me. Finally got up in middle of night and set in living room. I don't want this again. I want to be well. I've got to get a hold on this again.

    I agree with the saying, this would be a whole lot more manageable if I just knew when it would end. But, no crystal ball here.

    Prayers....Marsha

     
    Old 05-11-2006, 08:14 AM   #21
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    Re: Is recovery a roller coaster?

    Hi Everyone

    Was Sunday a full moon? I started to backslide on Sun. I had made a tiny bit of progress, I could feel the beginning of something good the last 2-3 weeks. Then Sunday symtons that had lessened started to return. By Tuesday woke up with stiff (rigid) legs and now arms and back. The arms and back had lessened over the last 2 weeks and now argh.......

    Was thinking maybe diet. Friday was my son's b-day, was stressed and ate like 8 oreos, then ice cream cake and mexican food. Sat was better but did have another piece of cake. Wasn't as consistent with the sauna last week and did not use it Fri or Sat. I'm back to my candida diet, and going to use the sauna daily and hope (& pray) this will help. It was encouraging to see even those small gains and frustrating to have them slip away. Story of our lives right.......

    Kim

     
    Old 05-11-2006, 09:13 AM   #22
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    Re: Is recovery a roller coaster?

    Dear Kim,

    Sorry to hear that you are backpedaling too.

    If this helps, I do notice that the days between my bad bouts are awesome.

    Its a long tough road but we're all here for each other. Hang in there.

    I thought of you a few weeks ago. One of my good days I went to Home Depot and saw a ready-to-take-home cedar sauna.

    Don't worry too much about the eating. We eat junk food more when I am at my worst because I simply cannot shop or cook.

    It doesn't make sense because thats the time when I should be extra diligent in watching what I put in my body.

    Keep up the fight! In the end, it will be all be good.

     
    Old 05-11-2006, 06:19 PM   #23
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    Re: Is recovery a roller coaster?

    Although I haven't been here long enough to keep all the names straight, I can almost see us all together...and instead of Sunday somehow being this strange interplanetary convergence of starting some very bad days...IT WAS FOR ME TOO...and Saturday had been so nice and so near what is...well...normal now...so instead, I see us all having wonderful days...and more than just that one or two that tease and then back into the pit.

    I am having a great deal of trouble with a new PICC line and again I just wanted to ask, without changing THIS thread...is there any board already started for PICC people...I thought I was so experienced, but this one is entirely different and well...I know that a PICC thread was here for a long, long time...surely there are more out there who have been doing Rocephin or other IVs and want to share...Please let me know..

    Anyway, for now I hope all of you on the roller coaster are having a better time of it, no matter how slight...every bit of better counts, right?

    Thinking of you all...
    roni/nico

     
    Old 05-11-2006, 06:38 PM   #24
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    Re: Is recovery a roller coaster?

    Hi roni.

    You are correct, there was a thread just for PICC line folks. Its kind of old (a couple of months). I think its a great idea for you to start another one up. That way all your questions will answered.

    Peace and health to all roller coaster passengers.

    Last edited by 6Blues; 05-11-2006 at 06:39 PM.

     
    Old 05-13-2006, 03:24 AM   #25
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    Re: Is recovery a roller coaster?

    Dear Marsha, Jodie and Denise...anyone out there.

    I must stop typing half the night (I am able and then deleting all the posts) this time I won't it is long but my last post, I am sure...I lost more to this disease that was already rip roaring through my system and had put me out of work on a lovely unpaid medical leave from Jan 05 basically till now(I would try to go back at every chance against doc's wishes, between the start of the school year in Aug 04 through Dec 04, as I was first getting so incredibly ill...That "early phase." was filled with accurate diagnoses but just other chronic viral and even bacterial and systemic candida and other problems, enough that I was treated with all manner of antivirals, alternative IV therapy and many protocols for all the things the blood work revealed, including a strangely failing kidney problem and super hypertension, among other things..

    Please understand, I have had autoimmune disease bouts of varying kinds in my life before, and had been diagnosed by doctors with CFIDS and Fibromyalgia along with Hashimotos (autoimmune hypothyroid) from my early 20s...I had a 10 year dx by rheumatologists in NYC of lupus and Mixed Connective Tissue Syndrome...so, you see, I am just not at all the newbie to this that I might seem. AND, that was way before my Lyme Dx. Oh, I had periods of "bad" times, sometimes stopping life in its tracks, but I nothing that was totally disabling and as completely horrific as this has been.

    I have been through many of the different oral abx protocols...first Doxy, , and I almost died, literally...that was just about 3 weeks' trial before I had a midline put in and was given the usual max. of 4 weeks' Rocephin, 2 days later, came Katrina. My life for 7 years was trying to stay here in New Orleans after a horrendous divorce in order to maintain co -physical custody of my 4 year old son...I had to stay, with nothing here but my son, my beloved NYC gone to me, and 70,000.00+ in debt to lawyers and living on credit cards to support my son...

    I lived in my car and would care for my own little boy in my former house and then leave to go and sleep wherever, I could not find work though I was highly qualified in many areas...5 years of searching.
    So, my nightmare began long before I got the Lyme...but just 3 years ago, I finally turned things around, was hired by the public school system to teach the Deaf and and was in the best physical condition of my life...running daily again and the athlete I had been most of my life.

    Then, just before school was to start in Aug 04, a mysterious rash (not a bullseye) but one that started low on my legs and spread to mid thigh,was totally misDxed...and is the apparent beginning date of this non-existent disease in New Orleans, with the tiniest percentage of Lyme cases statewide. Finally, sent to another Inf. Dis. Doc who tested me for everything short of Leprosy, my Ibnex Western Blots came up utterly positive, a year or more after I got the strange rash.

    I write all this because I really have been to Hell and back many times in my life and way before the disaster of Katrina right on the heels of my chronic Lyme Dx.

    Through the IV nurses after relocation, I found my wonderfully compassionate and knowledgable LLMD in N Lousiana because they had heard there were several patients on long term IV Rocephin being treated by this doctor That was one true GODSEND of Katrina.

    But after a initial positive response to Rocephin...I was forced off and on for a variety of reasons...and went on minocycline, combinations of doxy and flagyl and many other combos...but we saw, that only Rocephin had any real effect on my neuro-lyme. So, my LLMD ordered 6 months IV, first PICC...as he treated me for Babesia and Bartonella (or tried). I was often totally nonfunctional on these drugs but refused to give in. Even the results of 5 mos. of Rocephin disappeared within only a week or two of stopping!

    I fight my way back to blighted NOLA, after a 7 month separation from my TEN year old, taken to live in FL until Jan....No IV..well all 7500 NOLA teachers were fired and I was paying COBRA myself and they stopped the IV...two months off...and I was on the orals again...and no matter how I tried, the side effects (not Herxing) were so violent I was ordered to stop...

    Finally, a few weeks ago..I found out that could have the IV for 6 months again, and get a new PICC line. I wrote my first post...

    So...I seem to be a newbie, but am FAR FROM IT (appreciate beyond words the thoughts and suggestions of ALL of you) I am not new to chronic illnesses misdiagnosed, the loss of nearly everything, (even before Katrina, I was homeless and penniless after the storm and have no one who can help financially or otherwise.

    THIS NIGHTMARE OF A CITY, toxic before, and horrible now, is no place for sick people to live. My LLMD is 4 hours' drive one way and here I have no one to take me as before, so my only real doctor is as good as 1000 miles away now.

    I have written too much, but so wanted some of you here to really understand, I have been through so many Lyme treatments...my Internist was an MD and who specializes in alt. medicine..so I have gone with drugs and supplements both.

    I am at the end of my rope and that is the truth. No, that is NOT MY NATURE, but I swear that for almost a decade, more I have proudly perservered while often in the bowels of HELL.

    I have lost nearly everything including most human contact with anyone but my son, and that is no longer the alternating week on and off that I fought to have with my only child.

    NOW, I have nothing but rare rare moments feeling close to "roni" and I often wish I could die. NO, I AM NOT A QUITTER...I AM EVEN A CRAZY OPTIMIST BY NATURE...so I know Lyme Brain, as my son calls it, is part of the reason I am profoundly depressed, panicked, filled with dread, hopeless a lot of the time and wish to just have it all stop. However, my circumstances give me little hope, and they are my reality.

    I love LIFE, and ican delight in tiny things. If I had a shred of hope of anything being even remotely the same as 2 years ago even, I would go through anything, as many of you often say.

    YES...I am desperate. No one has a reason in the world to read through this most self indulgent, hideous bellowing but I needed someone to know, even one person out..I cannot last much longer like this...even doctors and therapists and others who had hopes; all good people who know me, now have little hope for me...what is a life of almost utter physical and mental pain, deterioration and isolation. I have fought the good fight a long time, my friends.

    In a few months, in spite of applying long long ago for any aid I could get, and I know all those horrors, both money and all credit cards will be gone. I moved back here withstrong Faith and prayers to let me live near my young son, but my life in this New Orleans is as dreadful as it could be...no husband, boyfriend, friends, neighbors, family or even a church community to support my soul and spirit...every morning I wake up and try to move and live through another day, an act of pure faith.

    I have pray each night that God will have mercy and take me peacefully...I am only in my late 40s and like so many of you in a blink of an eye went was fit "young" woman, to one trapped in this nightmare. The mirror a cruel reminder each time of the toll this has taken so quickly.

    I am posting this to a few threads in the hopes that it will reach some of you. I could not ever kill myself, but the thoughts of wishing for death are never far...and the doctors no longer argue much...IMAGINE THAT.

    So, that is all about Roni or what is now Roni, with advanced and unresponsive Lyme+ who cannot wait a decade to get a bit better...where will I go and what will I do in a few months when I have no money? The stress is constant and a true demon.

    I know there is no magic her...but the support of kindred spirits and very, very kind people who truly care, that is your gift. I waited too long, I cannot get help here.

    The thought of not seeing my son grow up is unbearable...but the mother I am now...well, I have to watch from pretty far away now, and he has to see me suffering greatly, I have to think it really would be better. Without the touch of a human hand, and a bit of love what in the world can keep we who are this sick in the fight for a tiny bit of wellness often temporary. SORRY...I don't belong here, I tried, but I think I waited too long to reach out and it is too late.

    Bless you and thank you for trying to welcome me and help. I cannot come here with the depths of my experience and ask any of you to listen or read further.

    I will say goodbye here and on other threads.
    roni eilene

     
    Old 05-13-2006, 05:39 AM   #26
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    Re: Is recovery a roller coaster?

    Really don't know what to say.

    I feel much like you in many ways. But I am responding at least to oral treatments of antibiotics.

    But I have much damage. I am always in great pain, hips, shoulders, ankles, back, hands, fingers and so on.

    But the pain is nothing compared to the mental hell this disease puts you through.

    My wife knows I believe I've used up this body, I look forwared to being free from its pain and mental problems.

    But for now I live in limbo, of sorts, trying to rush through life, to get to my end, peace.

    I believe in so much more than what is here, and can only say like you, I love (loved) life, but this disease really takes it out of you.

    I am at the point where all food causes me great pain as soon as I eat it. Even water is extremely painful.

    What I do is try to find the butterfly's of life. The pretty moments around me, but I so rarely feel pretty inside.

    Very hard disease, and only someone that has Lyme in the brain could even come close to understanding.

    I am not the same person I used to be, don't even know whom I am most of the time. But not that quick person always ready for life.

    I send prayers for your relief in your illness.

    I wish the best to you, spiritually and mentally.

    Sending lots of love in many ways, hope you catch some in the right places.

    Last edited by dealer1111; 05-13-2006 at 05:41 AM.

     
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