Topic: Been gone for a while but doing pretty well!
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
Maybe some of you still remember me. I haven't been around for a while - in part because of doing well and in part because of being so super busy with trying to finish school and a few other things that it seems I have very limited time to do other things!
For those of you who don't know me, my name is Annie and I'm 24 and I was diagnosed with Lyme when I was 15 (1997) but I've probably been sick since I was about 8 or younger. I've been on and off treatment since being diagnosed and over the past few years it has been a real struggle with steady decline despite treatment attempts. After a very rough time last winter and spring (2006) I slowly began improving in some areas (mainly getting my stomach under control so I could actually eat - that was one of the big reasons for the rough winter and spring).
I was finally able to start back on treatment in September 2006 after not being strong enough to handle much of anything because of malnutrition (still an ongoing problem due to gastroparesis but it's much better than it was). I've been on IV Primaxin since then except for a three week (unscheduled) break at the end of December/beginning of January because of insurance problems.
I've been seeing improvement and I'm starting to see a light at the end of the tunnel, although it's still a ways away. And for the past two months I've also been doing IV Flagyl for one week each month which is also making a difference.
I'm now so close to finishing college - a seven year journey - and graduation is planned for August but all my work should be done by mid-June. This is very exciting and I can't wait to finish and be able to feel that sense of accomplishment. I'm also busy teaching three theater classes (I teach children's theater classes) - one group in grades 1-2 who wrote their play with me (about princesses and monsters and realizing that it's what's on the inside that counts - very cute) and two groups in grades 3-6, one of which is doing Peter Pan and the other one is doing Charlotte's Web. In short - lots of work, stress, and running around but I'm loving it!
It's nice to be able to post here with some encouragement and good news for a change after years of feeling so cruddy. I've been diagnosed with a bunch of other things - mainly dysautonomia and gastroparesis - and the treatment for those things have made a difference but I think what's been most helpful to me is just being able to get the treatment I need from a great infusion company that is really working their butts off to make sure everything gets covered! And even with the hours and hours of infusions everyday, I've been able to remain on the go thanks to a portable pump to do all my infusions with.
Anyway, I just wanted to post and say hello. I don't know how much I'll be on in the near future what with my theater classes, an independent study at school, and two online college classes but I'll try to stop in every once in a while and check in!
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey ARG!&*)*!)*)!
Good to see you*)!*)! I remember you()!()!
It is funny you are doing Charlottes Web and helping make arachnids look sweet to the world*)!*)! The Arachnid Propaganda*)!*)!!
Your life sounds satisfying. I am glad!!! Best wishes, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Thanks for the encouraging words Annie! I hope you totally beat the lyme beast!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
What wonderful news, Annie. You offer hope for the rest of us.
I like knowing that you are not posting because you have a full life and you are healing.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
You made my day, Annie! You were the first person I talked to on lymenet, so this means a lot to me. If you keep up with your website, we'll know where to find you! Prayers for CONTNUING RECOVERY! Cindy
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hi annie! so good to hear that you're feeling better!
also, i just signed up for the lymeout retreat (hope it's not too late?), so i'll see you soon!
posted
Yes, I remember vividly how bad you were last time we heard from you. Always get worried when people are doing poorly and then disappear from the forum. But delighted to hear you are doing better and have an interesting life. Best wishes.
Posts: 8430 | From Not available | Registered: Oct 2000
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I remember you and remember what a hard struggle you have had.
So glad to hear you are doing better and getting back to life.
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Hey Annie, welcome back. So glad to hear you're doing better. I remember your camp & all the efforts you made on behalf of Lyme kids & us all.
Cheers! Posts: 2451 | From Lyme Central | Registered: Aug 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Annie!
Thank you for posting and it sure is good to see you and how well you're doing. Yay!
I've been thinking of you, lately, and wondering how you were doing. I'm so glad it's so much better than I could have imagined.
Keep up the good work!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
wonderful update. so good to hear your positive news.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
YEAH Annie!!!!!!!!!!!! so good to see your "good news" post. You are incredibly persistent and it is working. I know you have been through a lot and seeing that you are emerging on the other side sends hope to all of us.
You must be a great teacher given your inner light.
With wishes for continuing improvement, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Annie, forgot to mention, thanks for coming back. Many Lymenet Lymies get in remission & rarely come back.
Lyme recovery should be about giving back, epecially, since we all know how fleeting & coveted it can be.
Thanks for giving & taking.
[ 04. April 2007, 10:16 PM: Message edited by: Foggy ]
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Wow! I was surprised to see so many welcoming and encouraging responses to my post!
Glad to know I'm not forgotten. And it's so great to be able to update with good news. Sometimes I think it's hard, for many of us, to really see our progress because we're in the midst of everything and don't have a very good objective way to measure if the pain we're having this week is better, worse, or the same than the pain we had last week, last month, last year. But I'm getting to a point where I can clearly see the improvement I've made over the past year. Eventually things do get better!!!
So many of you have helped me along my journey and offered support when I was going through such a rough time last year. Sorry for not updating sooner so you weren't worrying about me!
posted
Hi Annie ! I do remember you , we talked once about our symptoms. I'm so glad your doing so well. I really hope it continues. What are you taking for the dysautonomia?
My best wishes for you ! Al
Posts: 789 | From CT, | Registered: Jun 2006
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
hey annie, thanks for sharing your good news! I wish you continued healing and joy Posts: 1563 | From MA | Registered: Jan 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Now let me think... WHO are you?
Oh yeah.. the little lady who could! That's my Annie!
So nice to see your smiling face dear. Actually I see it almost everyday as I have your picture here from the protest in NY.
It makes me smile.
Good to hear things are looking up!!! You are doing a LOT of work these days!!!
PLEASE keep us updated more often. You DO know we worry about you! We just can't help it as you are forever in our hearts.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thank you all so much!
And Tincup, I want to say a special thank you to you. You have been such an important source of support for me. When I was making that difficult decision to take time off of school, you were the one that put things into perspective for me, telling me that it's better to take care of myself and put school off rather than be lying in bed, really sick, looking up at the diploma on the wall (or something a bit more eloquent than that). Thank you so much for everything you have done for me and for being such a wonderful person! Reading your messages here put a big grin on my face - literally a grin from ear to ear because I'm only now really letting myself realize that I am a great person and knowing that I have people cheering me on makes my heart swell.
As you can probably tell, I'm going through some changes not related to health stuff and really going through a period of self-realization, self discovery, and reinventing myself figuring out who I really am and what I want for my life apart from what I think other people want. So I'm starting to look at things differently and knowing that I have support here (and elsewhere, too) helps me so much in this and all the other journeys I've gone through and will continue to go through.
And I'll certainly let you all know when I'm done with my classes and when graduation time comes around! (It's August 3rd if you want to mark it on your calendar! ) My aunt has been cheering me on in my school stuff, too, and plans to throw me a party for graduation. It certainly has been a journey and it's by no means over, even when graduation comes and goes. This is just the beginning!
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Oh, and tomorrow afternoon I have an appointment to chop my hair off to donate to Locks of Love! I'm going for a short 'do and I have some temporary hair dye that I'm going to use to make my hair more red than brown! Here's are a few last pictures of my long hair:
And one of it when I straightened it (which I don't tend to do that much but maybe with shorter hair I will!)
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
seriously annie, i'm SO proud of you. you're amazing and as you know i never would've made it through the roughest part of my lyme if it weren't for you.
SO MUCH LOVE, and can't wait to see you at the retreat!!
I started Primaxin in Oct. and you really really helped me out with it. You gave me great advice on taking it, as my home health was pretty bad, and I keep thinking of how things could have gone if it weren't for you.
I am still on Primaxin, and after three months I started improving every week.
Thank you for taking the time to help me out, you really made a difference in my life.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Not only beautiful.. but sweet as honey you are.
I'd chat.. but you've embarrased me, young lady. And I am soooooo very tired I don't think I can express all that my heart wants to say right now.
But do know you are in there. And I smile.
Forgive me for not sharing more. I need to rest now. I did go to the kitchen to write your special day on the calendar.. then, once I got there.. only about 5 steps away.. I forgot why I was there!
After doing some dishes, eating a snack, taking my meds... and coming back to the computer...
I remembered.
Lyme? Who ME?
Night night.
And thanks for sharing such a personal part of yourself with others. The donor recipient will be delighted... no doubt. Your folks MUST be proud of you.. as we all are... especially me.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Your web site is very nice.. and I enjoyed looking through. But I tried to make a comment to you and it wouldn't let me. And they were NICE comments too!!! Tried 2 times.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thank you, Tinny. And I'll be sure to post a picture or two of my new hair (and the long braid that will be cut off)!
Thanks for letting me know about my site giving you problems. Someone else has had problems and I thought it was just her computer but I guess not! I've sent a message to the people in charge of the site (the Caringbridge people) so hopefully I'll get that fixed, whatever it is that's wrong.
posted
Annie great to see you back and to hear your good new. You were so helpful to me when I was starting with my first port and was scared! I have been praying for you in you absense, and I'm so delighted with your improving health! Keep on going Girl! Posts: 663 | From NH USA | Registered: Sep 2004
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
My hair is short now!! Exciting (and a little strange).
Here are a few pictures of the act itself and the after shots:
In mid-cut
Done cutting!!
And the after shot! Exciting!
And one of the back view.
I love the new short hairdo but it's going to take some getting used to. I keep going to fiddle with it and find that there's so much less of it! And my head feels so much lighter. It's great!
Well, now that that's done, on to the next leg of my journey!
posted
HI! Good to hear you are doing so well.Remember me ,we got our ports put in at the same time.Port buddies.
I am so glad to hear you are doing much better and it is amazing that you are back and almost finished college.Teaching theatre is fantastic also.You must be really talented.
I have been completly off treatment since November and have been doing well.I haven't been feeling well this week though and hope it is just a phase.My Dad us dieing which is causing me a lot of stress which is having the usual effect of fatigue,etc.I am staying away for a week so that I don't continue to go downhill,unless I have to go and see him.
I am really glad to hear you are doing so well.
Take care,Sue.
Posts: 801 | From Kiama,Australia | Registered: Dec 2002
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
It's so nice to hear you are doing well Annie. That is wonderful news!!!
posted
I remember you, too. I had another screen name back then. Glad to hear you are graduating!
Posts: 298 | From Maine | Registered: Jan 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
God bless you.
If I could give you a hug I would with meaning, for we all know your pain and misery that surrounds this mystery.
Posts: 2905 | From New England | Registered: Sep 2004
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Ugh! That just about sums up how things are going. Ugh! Bleh! Humph! Ahhhh!
I'm struggling a lot with keeping up with my last college courses. Two are online and are just three weeks into the 10 week course but I'm feeling like I just can't keep up with it all. I haven't taken this many classes (three right now) at the same time in a number of years and it's just hard to balance all the reading, the labs for the online science class, and trying to make sure I don't neglect my independent study reading or my professor/advisor will probably not be too pleased with me.
Just too much to do, too much going on, not enough time to get it all done and sleep and try to eat relatively well (which is always a struggle for me anyway). I'm afraid that I'll end up crashing from all of this but I'm DETERMINED to get it all done! I WILL graduate in August! I WILL be done with my classes in the middle of June and be able to breathe a sigh of relief. I'm just worried about everything that has to happen between now and then!
The end is in sight for me (well, the end of school at least) and I'm so glad that I've been well enough to take on all of this but I don't know how I'm going to follow through with it all! I think a lot of this is the fact that, after two weeks of no readings for my online history class (History of the Holocaust) we suddenly have over 200 pages to read! That just seems poorly planned and completely overwhelming! And the professor is not particularly good with communication and answering e-mails (I sent him one at the beginning of the class explaining my medical situation and never got a reply).
I'm just frustrated. And exhausted. And worried. And overwhelmed. And feel like I'm slipping downward which I really can't do. GRRRR! AHHHH!
Okay, just needed to vent a little frustration. Hopefully my next posting about school will be that I'm finishing my classes and officially graduating!
well -i am one of the newbies--much older and slower since last year
want to take the opportunity to say thank you for sharing your great story and your website site is wonderful
I lived in Fall River MA and Worster MA Came down with Lyme Babs and Bartbetween there and CA and NJ - Getting better very slowely -
Annie - I am so happy that you are finishing school - - Keep on going you have a lot to offer to children that are lost emotionally.
You have been there and know the feeling
congrads and will pray that God will give you strength to Keep on Keepin On
mags
p.s. my dgtr(music and education) teaches second grade in south jersey- she loves it
Posts: 259 | From California | Registered: Mar 2006
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