Well aug. 1st i had surgery to remove my gallbladder as most of you probably saw by my post. Im back on rocephin 2 grams since aug. 2nd...yes 1 day after surgery i went back on meds lol craziness.

Im feeling pretty good. I have one question before i talk about the reason i posted. On saturday, i went to a little pig roast kind of thing with my parents...to make a long story short it was 112 degrees outside, thats with the heat index, probably 100 without.

Well as we all know, lymies are heat intolerant, or some of us..i have late/neuro lyme..well i was outside from about 11am until 4pm and all day i was pouring water on myself to cool down.

I noticed this rash forming on my stomach, that was the only place. It started out at white bumps, not big though little pimple looking things spread all over my stomach..then, when i got home i noticed it turned red, a blotchy kind of rash, not itchy or anything...just there.

I noticed that happened to me that friday when i was driving around i came home and had a rash on my stomach...same one. I didn't worry much about it at all, im still not..my mom said its a heat rash, but i never got heat rashes before being on antibiotics..is this why i got a heat rash?

I know people are told not to go out into the sun for prolonged periods of time when on antibiotics but hey...i wanted to get out and have a bit of fun! lol does anyone else get that kind of a rash when exposed to hot tempatures on or off ABX? I also got prickly type sensations while out in the heat as well, im told this is the spriochetes dying off, is this correct?

Ok now to my general question..Well i got a phone call today. It was a job offer, to work as a telemarketer...i want to work so badly, maybe even part-time or something but im worried i wont be a suiteable employee because i never know how i will feel day to day..im only 19 years old...im unemployed for over a year now and my parents are very tired of supporting my habit which is smoking...

Well on the phone i accepted the job offer even though deep down i really dont feel i can work. I know it may be a "nothing" job but even doing little tasks aggrivates me easily. I get very anxious and frustrated when i have to do too many things at one time. Recently im very on edge because i am having to do a whole bunch of stuff for my lawyer for my malpractice lawsuit, and ive been having to take zanax a lot because i get so aggitated.

its like i dont have patience with myself anymore. I feel as though i only accepted the job offer 1. because i want to please my parents and i want them to be proud of me, and i want to be the best daughter i can be, and the conqencuence of that is not tending to my own health first, and only doing what i feel others WANT or EXPECT me to do...or 2. because i want to have normalcy in my life, i have those hopeful feelings to living a life like everyone else. So when someone says, "you want a job" im quick to say yes even though i know i cannot physically or mentally do it right now.

What am i to do? I did chores around the house yesterday, and today im falling apart.. with the muscle aches, and i have a migrane, TMJ from stress, knee pain, lower back pain ect.. how am i going to be able to perform professionally doing a job? I am so confused right now and i need other lymies input really badly...what would your views be on this?

I have an appointment for an interview to see if im elligable for SSD on the 29th of this month, but then it takes 6 months to a year for you to even know if you are approved..my mind is racing right now.. i dont know what to do, im stuck in a tight spot on deciding wheather or not i want to start this job and probably loose it cause im too "slow" or something... or stay unemployed and hear my parents every day saying how they hate how they have to support MY habits and im 19 yrs old and every other teenager makes their own money and blah blah blah...i just can't take the stress anymore.

I've found since my surgery im becoming addicted to relaxants because ive been through so much anxiety and depression in the past 2 years and i just want that "calm cooling effect" for a bit...OR because im in pain, and i want it to go away...like tonight i needed a percoset so bad because my whole body is killing me...so since i dont have that or zanax (ran outa that too) i took benadryl so i can sleep and be calm and try not to have a migrane...i don't want to go down this road, its not a good one. im falling apart and i need some help...

any input would be greatly appriciated, everyone is free to email me any time because its always nice to know someone out there somewhere is feeling the same exact way as you, and it makes me feel as though im not an alien or a cootie..for a short while...

Hope to hear from someone soon with some good advice on this situation..thanks

Huggs and love to everyone

You need to rest. No work...unless its volunteering...at a place part-time.

You need to in no short terms let your parents know...that if you can't commit to beating this disease NOW at a young age...you will end up a lifetime burden on those you love, and in order to do this...you need their full....unswerving...support.

While other parents suffer the burden of kids at college needy money..because they partied too much of their own money away...or the Mom And Dad that have had their 27 year old move back in for the Third time in 5 years because they hold a job due to lack of training/education etc...

Let them know....that you need them to be on your team. This will help ensure the best POSSIBLE outcome...because, in the end...the possibility exists (although highly doubtful) that you may NEVER recover. (AT your age...the possibility of a recovery...is trememdously high.)

So grab their hands...look them in the eye...and ask them...to hold on...to help save you...to back you ALL the WAY.

No work...apply for SSD...at this point...you deserve it...do NOIT attempt this on yourkown...you need an advocate...find one.

Good Luck,

Trout

You sound like you're in typical lymie overdrive at the moment, and liable to crash at any time. It's very hard to cope with, I know, but you need to do your healing starting NOW.

Here is a link for the families of people with Lyme. I hope hope hope at least one of your parents will spend some time with this group and find out what you're up against. Or Trout will have to Speak Sternly to them. Eeek.

Caregiver Support

I agree with Trout.

Apply for Social Security and forget about the job right now -- getting well needs to be your number one priority. You are just too sick and stressed out to try working.

I am worried about you and your meds. You need to get on a schedule and stick to it. Pain meds and anti-anxiety meds can be addictive and they can make it even harder for you to think straight. Changing around the doses all the time will keep them from working like they should.

Do you have an aunt or uncle or former teacher or pastor or some other adult you trust you can talk to? I think you need someone like this who can sit down with you and your parents and help you talk to each other.

I'm going to sound really old, ya ready? I'm bracing myself...

this is the only body you get and you REALLY need to take care of it. And believe me, cigarettes are worse than alcohol and sugar in my book to quit--but if that is the main cause of friction between your parents QUIT!

Or cut the amount in half--get the patch, but those cigarettes will kill you before the Lyme will and they will probably help the Lyme.

Don't take the job. You are young. Put all your time, energy and talent into beating this disease. Take small steps a day to do this. Cut out one cig a day or one a week. Cut out sugar. Show your parents that taking care of your body is your and their number one job right now.

You have a wonderful opportunity to get rid of this thing--grab the ring--GO FOR IT! Don't let this opportunity slip by--it is the most important thing you will ever do.

For all of us old farts on here--we would love the opportunity to roll back time and fight this thing while we were young--don't look back and think "what if..." and that is what you will do if you don't get rid of this thing NOW!

L

Oh Korinne, I think the rash is Babesia--it really hates the heat. Get some Artimisin and pulse it (three weeks on one week off) IT HATES THAT! Do that and go out in the HEAT--Ohhh that gets it good!!! Lin

I finally won mine 2nd SSDI after 5 years total time spent!

IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE or LONG TERM DISABILITY BENEFITS
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BETTY NOTE: Look at the female MD's DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!
http://www.cfids-me.org/socsec.html

Betty's note: Here is EVERYTHING about the complete SSDI process; their rules/regulations! BOOKMARK IT PLEASE as you will come back often to read up on the next steps! http://www.ssa.gov/OP_Home/cfr20/404/404-0000.htm

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An online friend of mine from disinissues web site posted this info today, so I have copied it over here.

Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?

Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.

There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last chance!
=======================================

Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....

Also after this article are the following articles:

WHAT COULD BE CAUSING DELAYED-PHASE FLARES?

BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..

TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.

MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS

DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY

I printed this out in larger print for my eyes....9 pages! Will read it thoroughly and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also....

http://www.ilads.org/brochures.html
The following is an announcement from ILADS:
What you need to Know about ILADS and Lyme Disease and What Psychiatrists Should Know about Lyme Disease are now available in a PDF file on the ILADS web site (www.ILADS.org). They are in a printable version so that if you have a color printer, you can print them up yourself

Being a telemarketer would be a VERY stressful job! I've done a similar job, but it was face to face rejection all day long.

Telemarketing would involve ALOT of rejection all day long. That would equal ALOT of stress!!!!!

I also agree with Linda....get off the tobacco!! You're young, do it now! The patch is no more expensive than the habit, if I'm figuring things correctly.... and nicotine adds stress to the body, bigtime....not to mention the damage done to your lungs, etc.

Call the telemarketing co back and tell them you're just too ill right now.

OK?

We care!!

I couldn't have said it half as well as these guys did.

Forget about working for now, get better first.

Do find out if you're eligible for SSD and apply right away, if you are. It doesn't always take forever. I was approved first time, in less than 3 months. It's unusual but happens; I know I was very lucky.

I contacted a Center for Independent Living (advocates for the disabled) for help applying. There has to be something similar in your county. They should be able to tell you who to go to for help if they can't provide it.

In my case I stumbled onto a person who had gone through the process herself and understood how the forms and things worked.

ps. I get a reaction to heat whether I'm on ABX or not. I get an itchy rash though. I don't think it's from the sun unless you had your belly in the sun. (personally my belly hasn't seen the sun since I was around 10. )

I'm under the impression that the warning about the sun is too avaoid wicked sunburn. Some ABX are worse for this than others. Stay cool as you can and drink lots and then some.

pps. You can't apply for SSD if you are working and since working's not really an option, right now, don't jeopardize it just in case.

I know you're goin stir-crazy.

You're hatchin' up plans quicker than your mind can process 'em.

However, you need to put the brakes on!

You are definitely NOT ready.

Sooner or later, you WILL be ready, but it is way too soon.

Now, go apply for disability.

Forget that job. People will just be hateful to you all day.

I know it's hard and your family probably thinks that you're just lolly-gagging around all day and COULD be working, but that's wrong thinking on their part if so.

You're only getting this one chance to get better, NOW. Take it. The longer you put off getting really better, the harder it will be.

I ain't sayin' nothin' 'bout cigarettes, being a fairly dedicated closet smoker myself. But if you want to get out of the house (which is a heck of a good idea, IMO), find some volunteer work to do a couple days a week in your local hospital or old folks home. It will get your mind off your troubles and put things in perspective.

And get yourself well, girlfriend!

Hugs,

Michelle

This was way before the patch.

Do what you can to quit. You're just giving your money to the man--and you do enough of that with the medical copayment.

I agree with the gang that you need some rest. Sometimes when I am really feeling rotten I give myself permission to be a bum all day and all night. I usually feel more human in 24-36hrs if I really rest. If I don't give myself permission to do nothing or to do mindless things like solitaire, I get anxious, depressed, clumsy, and cranky. Not worth it!

Try for the disability. If you take a job then that's out of the picture.

Do you talk about the lawsuit money with your parents? Did you ever think of buying them something? If so and you are.........

They are just nagging you to quit smoking.

It just registered with me that you had your gallbladder out less than a month ago! Is that right?

My daughter who is 14 had hers out in March and it took a while for her to get her energy up. If she went out to an event like your pig roast, she would be in bed for 2 days. This went on for 3-4 mos. It is slowly getting better. Not to scare you--you may not be as lymey as she is.

All this to say you will feel better as you heal and your digestive system gets into whack.

And you are IV meds. That is really exhausting. I am sorry that you are going through so much. I know you will be so glad when you improve. Our visiting nurse for the IV told us that she found that Lyme patients on IV would exhausted, then one day they would feel much better. My kids both perked up like that after about 12 wks. It is hard to 33333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333e weeeeeeeeeeeesaz that was our cat trying to get on the keyboard to warm up.

It makes the thread go wide and hard to read.