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Lyme Disease Message Board


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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!





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