Omg...i Might Be On To Something

[AndreaB]

Have fun shopping, Susan. I'm trying to decide if I really need to go out. Talitha has been thinking of all sorts of reasons to not do school today. This is after having yesterday off since grandma came down.

You'll do fine with your preparations for Thanksgiving Susan.

I think you need to PM me your phone number so I can call and give you a pep talk sometimes.

Please don't put yourself down. You are someone I'm proud to call friend and you are valuable in more than my eyes as well. Look upward.

[Rachel--24]

So sorry for going on so long......but they would be RIDICULOUS to even think of losing an employee like me......they get me for next-to-nothing and I give them decades of experience......and make customers want to come back.

Susan,

That woman sounds heinous.

Just *imagining* all the stapleing, counting back change, receipts, etc....is giving me a headache. Those people obviously have got their priorities all wrong...have they not heard or customer service?? Not ever looking up and acknowledging the customer....unthinkable.

They could learn from you....you will bring customers back into their store cuz you're knowledgeable and likeable. If the customers love you....they will come back. Those people will lose good business if they let you go...they obviously have no sense.

When I'm in the checkstand at work...I've been messing up all the time. It doesnt matter that I've done this job for more than 15 years....my brain doesnt work the same. Customers bring in W.I.C. vouchers...its kind of like foodstamps but different. There are all these rules and regulations.....everything has to be done according to the rules. Prices need to be looked up and sometimes there is math involved....not a good thing. I dont know why but it seems like all the customers who use W.I.C......also use DRYER SHEETS....probably BOUNCE...the strongest ones.

I really cant be standing there breathing all this stuff in so I start spazing out....going as fast as I can....not looking anything up. Just trying to get them the heck out of my line. Sometimes if the "fumes" get to me I start hitting wrong keys...punching in wrong amounts but still in too much of a hurry to "fix" it. Its "survival instinct"....I really dont care about the regulations much when I'm feeling like I might pass out right then and there.

I've gotten several "violations". Its not gonna change because I know HOW to do the job....but sometimes my mind just goes blank.

[dlp252]

gotta go hunt down a turkey breast somewhere to make my own entire dinner for tomorrow. I know you all feel my pain so why am I whining about it here? But it is a crack up - - - ME, the non-cook, non-baker, FURIOUS about cooking, and I"ll be cubing up my bread for my own stuffinf, making my own cranberry sauce, and all the other crap......kind of funny since I have NEVER cooked one thing but mashed potatoes for TG in my life. harumph!

I'm taking Applegate Farm turkey luncheon meat and a cranberry all fruit spread I buy at Whole Foods, lol. I MAY live it up a little and take chicken.

When I'm in the checkstand at work...I've been messing up all the time. It doesnt matter that I've done this job for more than 15 years....my brain doesnt work the same. Customers bring in W.I.C. vouchers...its kind of like foodstamps but different. There are all these rules and regulations.....everything has to be done according to the rules. Prices need to be looked up and sometimes there is math involved....not a good thing. I dont know why but it seems like all the customers who use W.I.C......also use DRYER SHEETS....probably BOUNCE...the strongest ones.

Stupid dryer sheets! Stupid Bounce!!!!

[Rachel--24]

Andrea....cute picture of Seth.

Is that one of the new ones??

I think I'll be the only Rachelvillian working tomorrow. I dont care though....I'm not into the holidays this year. Hopefully it will be my last year of ruined holidays cuz of this heinous illness.

I'm not doing anything for Thanksgiving at all. Its the first year I'm totally not gonna participate but if I go with everyone I'll be miserable. Last year they had scented candles, everyone wearing perfume, me with my "special diet"....everyone wondering WHY?? I just dont wanna deal with it.

Speaking of mojo...was everyone born with one and does everyone have one, cuz I don't think I was or do.

Oh well Donna.....if you didnt get a mojo....at least you got a sense of humor!!

[AndreaB]

Andrea....cute picture of Seth.

Is that one of the new ones??

I'm not doing anything for Thanksgiving at all. Its the first year I'm totally not gonna participate but if I go with everyone I'll be miserable. Last year they had scented candles, everyone wearing perfume, me with my "special diet"....everyone wondering WHY?? I just dont wanna deal with it.

Yep, it's a new one. I'll be alternating between some of the pictures for awhile. Since Talitha's birthday is in a month, I'll be putting just her up in a week or two, then Micah etc.

I don't blame you for not wanting to go anywhere tomorrow. I can just imagine all the scent assaults you'd be under. Next year will be much better.

[dlp252]

Andrea....cute picture of Seth.

Is that one of the new ones??

I think I'll be the only Rachelvillian working tomorrow. I dont care though....I'm not into the holidays this year. Hopefully it will be my last year of ruined holidays cuz of this heinous illness.

I'm not doing anything for Thanksgiving at all. Its the first year I'm totally not gonna participate but if I go with everyone I'll be miserable. Last year they had scented candles, everyone wearing perfume, me with my "special diet"....everyone wondering WHY?? I just dont wanna deal with it.

Oh well Donna.....if you didnt get a mojo....at least you got a sense of humor!!

Sometimes I WISHED I worked on holidays...thankfully no one wears perfume or cologne in my family. No candles either. Bounce yes.

[DingoGirl]

Andrea.....thanks for the words of comfort. No pep talk needed, just help COOKING. I have a very hard time reading recipes, it's gotten much worse, I must look at a recipe about THIRTY times when I use one, and the second I walk away from it the information/measurements have dingo'd my brain. That is why I hate cooking and hardly EVER use recipes.

Donna's plan is sounding quite good to me now.

Rachel - - - - HEINOUS!!!! Your job - - I could never do it and I dont' now how you manage.

I guess I am the only one that likes the smell of dryer sheets. I mean, the huge concentration of it in the store is a bit much, but I use th em and like them.....but I would never use them on the sheets and ironed pillowcases sprinkled with lavendar water on my visiting Lymie friends

gotta go!!

[loraleena]

Rachel, I have the same scent issues as you. Can't you ask family members to be scent free while your there? Mine accomodate me if I remind ahead of time. Also have you thought of having a mask at the checkout for emergencies. I know it is embarrasing but better than being sick. They have breathable soft comfortable ones at I can Breathe website. I am going to order one to take with me on vacation to florida, in case I get stuck next to a perfume slathered person on the plane, or the hotel room is stinky.

[CarlaB]

Hi everyone! Just a brief check in ...

Andrea, adorable picture!

Rachel, since your mom is so concerned about your bills, give her your checkbook and the stack of bills, she can do everything for you except sign the check. It will help both of you. (This is what I Dingo'd earlier).

Susan, some people are bad business people. The store you work for sounds like that ... I can't stand shopping in places like that. If you don't keep the job, you certainly can't blame yourself. You don't want to stop giving your good customer service.

Everyone else -- HI!!

[rinne]

My grandmother always said, if you're awake, then maybe your body only needs rest ... just lay there and get some good rest and don't worry about not sleeping. I take her attitude and after a bad night's sleep, but a good night's rest, I usually feel pretty good the next day.

I think this is very good grandmotherly advice.

So sorry for going on so long......but they would be RIDICULOUS to even think of losing an employee like me......they get me for next-to-nothing and I give them decades of experience......and make customers want to come back.

So nice to hear you getting you.

I have a virus in my computer and don't even know if this will work, if it does I will post more, if not have a Happy Thanksgiving.

[Mtndog]

Yeah! Evie's back... that's reason to be greatful!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Rachel and Susie- Sorry yesterday was full of heinousness! I hope Thanksgiving is better!

Everyone else- Have a good holiday! Hugs, Beverly (who is still missing her mojo)

[rinne]

I guess I am the only one that likes the smell of dryer sheets. I mean, the huge concentration of it in the store is a bit much, but I use th em and like them.....but I would never use them on the sheets and ironed pillowcases sprinkled with lavendar water on my visiting Lymie friends

gotta go!!

I should hope not.

I had a long chat with my Lyme friend today about my Hoffman experience. It threw me for a loop and I am not sure yet that I know how to talk about it but I want to try. Before I do though, when I finished talking to her she said, "welcome to the world of Lyme patients".

I thought that Hoffman as an Integrative Doctor using alternative modalites would credit them with some validity, not only that but having been a conventional doctor prior to that he would be aware of and use clinical diagnoses. When he saw me he told me that on the basis of my history, my physical symptoms and the muscle testing that I had Lyme. When they faxed me the results of the Igenex test I understood that Hoffman and I would be discussing them and did my research.

When we spoke the first thing he said was well your tests are negative, we need to do more testing. I asked him about the bands and he didn't have the test in front of him. He left for a minute and then came back with a pile of papers he started shuffling, at this point I thought what kind of idiot am I dealing with? We discussed the bands and it was clear to me that he didn't know as much as I did nor did he seem to understand that there are reputable Lyme Literate doctors who diagnose Lyme on the basis of only one band being positive. Then I pointed out the statement about clinical significance and he said something like well yes that would be part of the testing.

I asked him about the salt/c and whether it would have had any affect on the Igenex test and he didn't know but he thought probably not. I am going to look into it further. At the end of our consult he mentioned that he had sent me home with the Cowden protocol but that was the first time I heard him mention Cowden and he had emailed me the Klinghardt protocol to begin with so I felt like he was just pulling protocols off the internet and really didn't know what he was doing.

I feel just as frustrated with him as I did with my old doctor who didn't think my B12's were low though they were 228 because that is what the test results gave as an acceptable level, the same thing with Hoffman he read the Negative and didn't seem to look further. I was stunned.

I feel like I encountered a conventional doctor dressed in integrative garb and that the bottom line is that I am on my own to deal with this, he is not going to help me. That saddens me, I had hoped that I had found an ally but I see now that I was mistaken.

I have hesitated to post this because I don't want to discourage anyone from seeking help wherever they can find it, I am just sorry to say that this experience has left me feeling that unless a doctor has had Lyme they really don't get it.

I go through my days parceling my energy out, I am in pain from the time I wake till the time I go to sleep, when I am with people I make my best effort to contain my misery so that I am not leaking it all over them. I am intelligent, articulate, funny and I feel like I am being penalized for not having early dementia. I can walk, dance, paint, cook and do dishes and I credit that to a simple organic diet and a life with little stress; I know that if I ate a processed diet and worked a stressful job I would be nearly comatose and yet I am not taken as a person who is ill because I still have joy in me. I feel like death is stealing the life from my breath and bones and I am often overwhelmed with the desire to simply lie down and die and yet I try to contain that, I try not to feed it and because of that I am not seen as truly a victim of illness.

I am glad for my friend and I am glad for you. We are stronger together.

[jerseyangel]

Oh Rinne,

I am so, so sorry about your disappointing (to say the least) consultation. I know that you had such high hopes that this person would be the one to help you through all of this. To find out that he's really just another one of "those" doctors that we all know so well has to be a huge letdown.

Keep taking good care of yourself. I'm glad that you decided to post about this. We understand that you are suffering, and are right now quite disillusioned.

Sending lots of positive thoughts your way

[AndreaB]

Rinne,

I'm sorry too. That is a big letdown, but you are a fighter and you will continue to research and find someone who can truly help you.

I know you've already spent soooo much money. But would it be plausible for you to go see that lyme literate doctor in NY? I don't know the provices so I don't know which American state you are over. There has got to be someone somewhere. Is you friend seeing anyone for treatment? Is there networking you can do among lyme patients around your area?

Hugs and love, my friend. We'll allow you some down time and reflecting but are here to help pick you back up, encourage you and help you as much as we can.

We will win this battle and put you back on a road to better health.

[rinne]

Thank you Patti and Andrea, it helps to know that others get it.

I wanted the Igenex test and I spent a lot of money to get it but I also learned something along the way and although a clear postive would have made me happier I can live with the one I have. I know what has happened to my health since that rash, I know I have forty some symptoms.

My friend says that she and many other Lyme patients have given up trying to find doctors precisely because of the experience I just had. They rely on themselves and eachother for support, research and treatments.

[Green12]

I go through my days parceling my energy out, I am in pain from the time I wake till the time I go to sleep, when I am with people I make my best effort to contain my misery so that I am not leaking it all over them. I am intelligent, articulate, funny and I feel like I am being penalized for not having early dementia. I can walk, dance, paint, cook and do dishes and I credit that to a simple organic diet and a life with little stress; I know that if I ate a processed diet and worked a stressful job I would be nearly comatose and yet I am not taken as a person who is ill because I still have joy in me. I feel like death is stealing the life from my breath and bones and I am often overwhelmed with the desire to simply lie down and die and yet I try to contain that, I try not to feed it and because of that I am not seen as truly a victim of illness.

rinne, are you trying to make me cry? This was so beautiful what you wrote it and went straight to the heart and made me tear up, not only because I am so sorry you are going through this day in and day out, but that I can completely relate to being in this place, feeling this way. You said it very well, as always.

I'm very sorry about your disappointing appointment, it is draining and takes a lot out of us, but just know when one door closes another door opens. You just keep on your path and you will connect with the right people as you become more and more educated about this.

Susan, I am so sorry to hear about your heinous work environment. All I can say is you just keep being you. You bring a lot to that store, something you and only you can bring, and the customers are all the better for it

Hi Bev, Happy Thanksgiving to you too

Andrea, how could I forget to comment on little Seth's picture. Susan is right, he looks like such a little man. So adorable!!

Love to all

[AndreaB]

Andrea, how could I forget to comment on little Seth's picture. Susan is right, he looks like such a little man. So adorable!!

Thanks you guys. I just put it up this morning so you didn't forget.

In case you guys aren't going to be on tomorrow....Happy Thanksgiving to everyone.

Rhonda,

We'll need to try and remember to keep you in mind in October.

My friend says that she and many other Lyme patients have given up trying to find doctors precisely because of the experience I just had. They rely on themselves and eachother for support, research and treatments.

That is so sad that things have to be that way.

How do you know if your organs are handling detox and stuff?

These doctors are frustrating me no end anymore.

On a happier note though....I called the doctor I like and he still does almost full practice. He doesn't have a hospital that he is affiliated with anymore so he's gotten out of hospital type surgeries. Not so sure I want to see him for everything though.....I need my annual exam....unfortunately.

[Rachel--24]

Rachel, I have the same scent issues as you. Can't you ask family members to be scent free while your there? Mine accomodate me if I remind ahead of time.

It wouldnt be my own family members I'd be visiting. Since my mom remarried she goes to his family's house every Thanksgiving. Since I became single (and sick) I've been going over their house...but I dont know his family well....only saw them once a year...on Thanksgiving. I dont think my mom wants to make a big deal about everything....it makes her umcomfortable....so I'm just staying home. My mom would be stressed out if I went and was not feeling good....and I would just be miserable anyway.

No masks for me.

Rachel, since your mom is so concerned about your bills, give her your checkbook and the stack of bills, she can do everything for you except sign the check. It will help both of you. (This is what I Dingo'd earlier).

Carla....this was the deal. She would take over paying all of my bills...I will just sign the checks...she will balance my checkbook and everything else. I'm a couple months behind and have all of my mail piled up....a HUGE amount....plus my checkbook is an unorganized mess. I told her I need to get everything organized and caught up.....then she can take over. I go through this every couple months...then I get it together only to let it go for another couple months.

Theres no way she can take over now because she doesnt know whats going on...and some of the bills I've paid over the phone. Its really bad but I just wait till the creditors call me and then I pay over the phone and I'm done with it. It sucks because before this happened I dont think I ever made a late payment in my life. I paid every bill as soon as I got it and my checkbook was always balanced and perfect.

Ever since we made this arangement my mom has been nagging me to death about getting it organized and telling me to just give her all my bills and she'll take care of it. Last night I just wanted to rest from my treatment and I had already told her it wasnt gonna be a good night for bills. I ended up getting really stressed and really upset. Went out to my car...got like 3 big bags of mail.....brought them in and dumped them all over the floor...with my checkbook...and said there you go....have at it.

Yeah....I know...shes trying to help and sometimes I dont handle myself well at all. I ended up going through all the bills and my mom helped me. Its done now but I cried the WHOLE time.

I get really upset because I dont like that my life is so unorganized now and even worse....almost ALL of my bills are just late charges piling up. The balances were very low....but now they are getting high...just because of the late charges.

Now my mom said she is gonna pay these off so we dont even have to worry about them anymore. The main thing is to not waste money on late charges because I need it for my Dr. appts. and treatments.

The whole thing is very stessful for me so I think I just ignore it because I cant handle the stress....but all I'm really doing is creating more stress for myself.

Even now....with her taking over everything I'm still VERY stressed about it. I just want my life back....I used to be very responsible and now I'm just a mess. I only focus on getting better, researching, paying for my treatments and I just avoid everything else.

[CarlaB]

Not so sure I want to see him for everything though.....I need my annual exam....unfortunately.

LOL, I've been going to the same doc for that for 16 years ... I STILL drive to Indianapolis!!! It's worth it to not have to go to a new one. Plus, he was happy to do some other blood work for me since I didn't have anyone else to do it to see how my various levels were ... and he accepted dietary response for gluten intolerance and told me I needed to stop looking for clinical proof. I like him.

Rhonda, sorry it went so poorly with your doc. I guess it's really important to get someone who specializes in Lyme.

[rinne]

Julie, thank you, but you made me cry..... well just a few tears

Rhonda, sorry it went so poorly with your doc. I guess it's really important to get someone who specializes in Lyme.

Big time.

Rachel, I sympathize about the bills. I finally admitted to my sweetie that I just couldn't do them, it's like a mental block, every so often I can get organized but it doesn't last. I'm glad you have your mom their to help you.

[dlp252]

I think this is very good grandmotherly advice.

Ha...I happened to ask the receptionist while I was there for my PT appointment how long I should give the melatonin to work...she said "um, should work right away", lol...then she called one of the dcotors who upon hearing that I've been waking up at 12:30 for 2 weeks and mostly not going back to sleep, said "Um, she needs to see one of us". So they fit me in with Dr. Rick.

They don't want to get too carried away with stuff yet because they're still waiting on the results of the stool test before formulating the "plan"...but he did give me some herbal stuff which is supposed to help the melatonin...it even relaxes muscles... We'll see. Nothing works on me like it's supposed to.

He had a long explanation about how the body functions work and it all made sense as he was speaking and I don't think I could relay if someone paid me a million bucks, lol. Basically, I'm messed up.

[AndreaB]

Rachel,

Hugs for you.

I know it's stressful for you to have all these bills and late fees pile up. I'm glad your mom is willing to help you out. If your mom is going to get everything taken care of then all you will have to worry about is your monthly living expenses plus your treatments. Just hand everything to your mom and once you start through your healing process and on the road to better health you can always take it back over.

How'd your day today go?

Carla,

It would be nice to see the same doctor for that long. I'm glad he was open to accepting your gluten intolerant diagnosis.

Basically, I'm messed up.

Yah, but if you have lyme you have an even better reason to be messed up. I'm sure the mercury isn't helping. My doctor blames my mercury for my few intolerances. I don't have any other issues that I know of.

[dlp252]

I am glad for my friend and I am glad for you. We are stronger together.

Oh Rinne, I am just sooooo disappointed in him! We have so few people who "get it" and it's just disappointing when someone we thought got it, didn't. I'm so sorry! Hugs to you!

[Judyin Philly]

HI Everyone.

Can I just say to you all--I'm so sadden by all the frustration that you all are going though.

This struggle for wellness w/o the help of the medical profession is also so sad.

Prayers for all

esp Rhonda, Rachel, Susan, Andrea (your journey to Dad's) and Juliem

Rhonda, please don't give up, the answers must be there somewhere in that pile of test results.

i love you all and miss you

judy in philly I pray that you guys soon will have a reason to find the again.

[CarlaB]

Rachel, I totally relate. When Adam's out of town I won't even get the mail. Usually it's just for a night or two, so he doesn't notice, but if he's gone all week, he gets upset that I won't even get the mail and bring it inside. I can't imagine if I would have to pay the bills!! I'm glad you worked through it and your mom can take over for a while. I completely understand. For me, it's my flute .... I play every Sunday at Mass in front of 1000 people, and I never practice and end up sight-reading at Mass. I think about going to choir practice, but it's at 7PM, and I just don't have the energy to go at 7, especially since I usually put off making dinner as long as I can because I move so slowly. So, we all relate!! Even if it is a slightly different problem for each of us. A friend of mine who is an ex-professional oboe player used to get so frustrated (when we lived in Indiana) .... we played in a quintet together and he'd always tell me that the only difference between me and him was practicing scales ... yeah right, I have the energy for that! I usually have so much muscle pain and shoulder pain that it's hard enough to hold my flute for Mass!! But, he was willing to sit with me and practice some of the harder music we played as the flute parts were VERY challenging. It's nice to have those patient people in our lives who are willing to work with us and support us any way they can. He'd see me at band when I was really sick and losing so much weight and just come over and give me a hug. Your "oboe player" is your mom.

We'll all get better and be better people for having had this experience, for suffering and not succumbing to the illness, for the extended commitment to get better, for the detachment from the material world, and for the friendships we've made here.