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 Post subject: Starting to get why people give up
PostPosted: Sun Aug 09, 2009 7:15 pm 
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Joined: Thu Sep 25, 2008 7:46 pm
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Location: Dutchess County, NY
I am not giving up, but I totally understand why people do. I have had 3 IV treatments and as of the most recent two, I am completely zonked. Completely and utterly sick, can barely function. Not pain, although I have some aches and wicked headaches every day.

Feels like I have the flu, a really bad flu. Also I feel like all neurological symptoms are back in full force. In my life, I have had anxiety, panic attacks, OCD, depression, etc., and it's like I took a pill that would cause those things to stir up again, all at once.

I am so irritable, moody, feel like I have no control over my moods, like this heavy weight or pressure is over my head/mind. It is horrible. I feel guilty about it, and I don't think my kids and husband can possibly deal with me another minute. I know I already mentioned the noise thing, but noises hurt my head so badly, I cannot deal.

Don't have any desire to go on anti-depressants, none at all. I have been trying to wean from that for a while and am almost done. I wonder if there is something I could get at the health food store that might alleviate some of this?

Thanks for listening. J

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Taking all the evidence together, it is not too much to say that there is no single historic incident better or more variously supported than the resurrection of Christ.
B.F. Westcott


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 Post subject: Re: Starting to get why people give up
PostPosted: Sun Aug 09, 2009 8:50 pm 
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Julie - I swear, I saw your post title and just 10 minutes ago I was thinking how this stinks so bad, if you give up you can get worse, if you go on you can get worse (before you get better) thinking about this is overwhelming.

Not only that, how much it consumes my thoughts! UGH!!!!!! From morning until night! I wonder what I thought of when I was well!

I can so relate to the sick flu like feeling too. I don't know why I have had the worst of the pain and then more recently the worst of the brain symptoms. I don't get it. I can tell you they both are torture. The first 2 years it was pain, pain, pain, now the brain fog and other psych stuff, I can literally sympathize with everyone now.

I have a friend on IV who is about 4 months into a pretty heavy treatment plan and she said "It is like being in the trenches and there is no turning back all you can do is go on". Makes me want to scream!

I asked her, "Who knew that something so utterly devastating existed? I mean, get worse before you get better? Who would have ever dreamed this? Certainly not me...my life was going along fine - not perfect, but now looking back it seems pretty perfect now, I wish I had appreciated it more.

I am a great help ..lol. I can just relate, I know how you feel - but at least you are doing IV which has more promise than orals. People get well.

Read my post I put up today about the woman who climbed a mountain within a year of having severe Lyme disease. Stories like that are what keep us going.

As dark as it gets, God's with you.. you never realize how much He really is there until you look back, how else could anyone get through this?


Hugs & prayers,
Dana

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 Post subject: Re: Starting to get why people give up
PostPosted: Sun Aug 09, 2009 9:12 pm 
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Joined: Sun Feb 17, 2008 8:28 pm
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I know exactly what you mean when you describe psych symptoms...but the thing is, it gets better. I'd say im about 98% to full wellness and that is coming from a person that has been on the floor more times than I can count at 4am crying and scrambling for the xanax bottle because the anxiety, nausea, depression and everything else was stacked sky high. Even now my remaining symptoms are psych things. They DO go away though, slowly but surely they leave. Hang in there Julie

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"...I am the LORD who heals you." - Exodus 15:26


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 Post subject: Re: Starting to get why people give up
PostPosted: Mon Aug 10, 2009 9:29 am 
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Julie,
I know exactly how you feel...this whole thing can be daunting. Just stick close to God in those darkest times , He WILL bring us all thru this. I know it's not always that easy, believe me I know. Dana and I both have been at suicidal points in our lives and it's just insaine. I know what it's like to not feel like you, to be sitting back and seeing it happening and feel like there's NOTHING you can do. Just dig your heels in because it will pass. Read everything you can , healing scriptures, His promises, listen to worship music...

I just did vacation Bible school this past week, 5 days, 3 hours a night, at least 30 kids in my care...I was exhausted, by wed. I so didn't want to go, but once I was there, and that music was on, and you could just feel His spirit, it was like "hey, I'm still here, I WILL be alright, thank you Jesus!" it's just keeping that mind frame that gets hard sometimes. I want unshakable faith.

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: Starting to get why people give up
PostPosted: Mon Aug 10, 2009 4:28 pm 
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Julie, I would ask if I could skip the next dose. Then continue with the schedule. Just see if a small break would help.[ Of course we all need to drink plenty of water!] And then maybe Rocephin is not the best choice right now.

I did not go thru what it sounds like you are going thru. I did it daily and loved it. Although I did take a break a couple of times when things got a little ruff, at the beginning. Hopefully things will start going better for you soon! Gina


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 Post subject: Re: Starting to get why people give up
PostPosted: Mon Aug 10, 2009 5:13 pm 
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I was thinking about doing that, and skipping a dose this week...but I feel like it must be working, and since I am off from work until september, I feel like this is my prime opportunity...

I am only doing IV Rocephin 3 times per week at the most, and only for the month - after this I will cut back because i will be teaching again. Maybe I am making a dumb decision and if it gets too bad I will cut back or stop. However I don't know how long my family can deal with me....

Today I was 1% better - actually took the kids swimming. This is progress....but now I am once again non-functioning yet trying to function. That is fun.

Thanks everyone. J

_________________
Taking all the evidence together, it is not too much to say that there is no single historic incident better or more variously supported than the resurrection of Christ.
B.F. Westcott


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 Post subject: Re: Starting to get why people give up
PostPosted: Mon Aug 10, 2009 8:08 pm 
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Praying for you Julie. Feeling psycho is no fun; just pray it out. Know that it is not you, it is the disease process. Every day is different. Love to you.


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 Post subject: Re: Starting to get why people give up
PostPosted: Tue Aug 11, 2009 3:54 pm 
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Julie, if you have a month till school starts. That's great! That was my turning point. I believe you will be able to do IV treatment and feel ok!


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 Post subject: Re: Starting to get why people give up
PostPosted: Wed Aug 12, 2009 8:55 pm 
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Yeah well it is actually a little less than a month, but I am still going to get as many IVs in as I can in the next few weeks...I feel horrible, just horrible, scary herxes, but I know the only way to get out of the trenches is to go through them....so I trek on....

_________________
Taking all the evidence together, it is not too much to say that there is no single historic incident better or more variously supported than the resurrection of Christ.
B.F. Westcott


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 Post subject: Re: Starting to get why people give up
PostPosted: Wed Aug 12, 2009 9:38 pm 
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So proud of Julie...I know this is tough. I would like to start w/one month of IV's no picc line, just like you. I just have to say the word to my Md..first actually I need an allergy test for Rocephin and then I am wide open to start.

Time to do the allergy test soon, I have put it off long enough.

My mom use to say, "Nothing worth having comes easy"...she has no idea!

Hang in there...it will probably help you so much..keep your eye on the finish line, hopefully you will see some light at the end of the long tunnel.

Love,
Dana

_________________
~~~~~~~~~~~~~~~~~~~~~~
Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
Follow us on Twitter https://twitter.com/TruthaboutLD
Truth About Lyme Disease Home Page: http://www.truthaboutlymedisease.com
Truth About Lyme Disease Video : http://www.youtube.com/watch?v=ZGQINypsf7g

Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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 Post subject: Re: Starting to get why people give up
PostPosted: Thu Aug 13, 2009 5:47 am 
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Dana when will you go for the allergy test? Is that something you can just do anytime?

I know that even once a week of IV has to do something - I can tell from the herx - so I say GO FOR IT.

I am pursuing the picc/port and my LLMD is going to call the insurance co. and we are going to see if I can get something covered. It would be nice to not have to travel as much although on the other hand, i am so thankful that i CAN get to my LLMD's in only a little over an hour...

Off to set up my classroom and back for more Rocephin. :) Julie

_________________
Taking all the evidence together, it is not too much to say that there is no single historic incident better or more variously supported than the resurrection of Christ.
B.F. Westcott


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