Lyme Disease Support Group

But because of you guys mainly, I have some hope that this starting to turn around. I needed to gain a proper perspective from other Lymies.

Does anyone have this problem of not being able to get your thoughts out of the gutter?

I have just assumed that my family thinks I am just a lazy person who does not want to work, and that has made me look at them alot with distrust, even though my Mom, sister and her family have never said anything negative to me about my illness. Only my aunt and a cousin basically.

But I am trying really hard now to have more trust and see things from a positive light. But I tell you, this disease keeps a gloom and doom feeling over my head all the time that I have to keep chiseling through with an icepick.

I have to stay away from negative people who can't see me in a postive light. I just disconnected from a long time friend who I realized doesn't support me at all in who I am or what I believe, and does not believe I have Lyme.

Instead, I am turning to those around me who do believe me and support me, and this is making me feel more positive and grateful. And that includes you all!

Heaping blessings upon your heads!

WE(lymies,fog heads,crazies) what ever one wants to call us is in a transition..

My take is this...When we where "normal" and not sick we trusted everyone, our mailman, our dog, our family, the vehicle, the cop on the street, OUR DOCTOR, our Gov't...we pretty much had an "open heart" to all...

Well, getting this dis-ease like Waxby would say, has us changed. We see the real world for what it really is.

Can't trust the Doc to treat you right, gov't don't give a darn, family is in denial or just clueless,..and on it goes..

We have to basicly CHANGE our lives to a 360* circle.

Find a special LLMD to help us, be treated with what most of the world say is wrong. We must change our diet and can't "hang" with our friends at the corner bar..

We are left holding the bag to take care of ourselves,our children, our parents, raise awareness to others to provent them from getting hurt by that little tick,we must do it all and still feel "FINE"!!!

It is all on YOU! the one who is sick with Lyme and it's co-friends..It is you..it's all in your head!

Vic, we have to be the bigger one, we not only must fight this demon that invades our body...but we must forgive all those around us for their misunderstandings.

We must respect our Aunt and Cousin for not holding their feeling back and saying what is on their mind..

We must respect our folk and family that are holding back their true feeling on the subject..because they know they may not understand...but in their hearts they just want you back...(healthy)???

My advatar is not because I like Johnny Cash(I do) it is a symbol of what we must do everyday.

We have to walk that fine line...

I also like his advatar, because if you follow Cash's life and his songs and stories...it was never perfect!

He battled what we do and did for different reasons but in the same life we live in!!!

The other day a "friend" said something...I turned and if looks could kill...I was going to let him have it!

but...the looks on his face knew, he chose his words poorly. I stopped and just smiled and said, I forgive you for not understanding the same things I don't...

He looked at me, took in the words till he "got it". He said, I just want you to feel better..

I said, you and I both!

Vic, It is so hard... we are the ones that must find in this whole mess of our suffering NOT to be negative, we must be strong for ourselves and everyone and everything around us!

Hey, I did not sign up for this job...It was given to me The pay sucks, the food sucks, the rewards in return suck.. But at the end of each day I wipe the dust off my shoulder and smile..tomarrow is another day!

wlkthlne

Sometimes I think it is truly mind-boggling what is expected for those with Lyme & co.

Yet, I look at where I was just 2 short years ago in my understanding of this disease...and the true crash course I've had in EVERY aspect of this disease.

Two years ago - I knew NOTHING about alternative medicine (herbs, rife, colloidal silver etc..) and probably would have thought someone was crazy if they chose this route back to health...

I would have thought that something else was wrong if they weren't better after a couple of weeks of abx..never mind a couple of years...

I would have thought they were too self-absorbed if they worried about their health and every ache and pain they had...

and yes, I would have thought they were lazy ( or atleast in need of a big cup of coffee) if they slept all day...

Truly, this is my *confession* and I have to assume today that most of the people we run into who say/do the wrong thing...have just not had that *crash course* yet...

Well, off to make sugar cookies for my son's Christmas party...(Funny how sugar cookies almost strike as much fear into me as the ticks themselves!)

Vicki, have a great day!

Hugs,

Jackie

I'm sorry to say, but I have kept a very positive attutide throughout my lyme and breast cancer, you can't walk around negative it does not help you. (I don't mean you do) I sometimes think its the nature of the beast.

Regarding family and friends, like I told mine, either you are with me all the way or not, if you don't want to stand by me, I fully understand but also realize I will pull away so don't ask "WHY" when it happens. I had many friends stand by me and many walk away--And that was ok. My family some were great some not so great so I would not speak to them about my health---People tend to get sick of always hearing the sick complain so I decided to STOP and wait for them to ask me, and they did....

When I got Breast Cancer my one sister said "Here we go again" at that point I decided not to bring up my BC with her, she finally came around--It hurt--but I got over it, I had to...Today she does a lot of research for me regarding all my treatments.

No one asks to be sick, we were given this we did not ask for it, its up to us on how to decide to heal are bodies....

WTL, I think you are right in that this disease does something to make us see things that we didn't have to see before. I have seen alot of things that I wish I hadn't in myself and others. All the human weaknesses seem to become way to apparent.

Jackie, I think you are right in that it is mindboggling what is expected of us with this disease.

And as soon as I have a pretty good day, the weight of the guilt I feel when I realize that I am standing there feeling almost normal for 24 hours, but don't have a job, crushes down on me and takes any good feelings completely away.

I just can't really truly ever enjoy a good day when I am given one.

Julie, it is good to hear that you are able to keep a positive attitude through all you have been through. I wonder if having the infection in the head is what brings some of us down?

I am determined to get back the old fun and goofy self that I used to be before this disease. But I have to work hard at it. It was a whole lot more fun to be blind to the truth!

I'm heading off to confession every week now to dump all these negative thoughts. If I can't take a drug to numb my brain, then I've gotta take something on a regular basis or this disease is just going to pull the black veil over my head.

I love the honesty of you guys, and efforts that I see you all making! Talking to you all has been one of the best gifts ever!

i used to look at my glass always HALF EMPTY! i always envisions the worst things happening so i was prepared for it when it did come. i worried for NOTHING so much.

i'm not quite sure when it changed, but it was after i was married at least 5 yrs. since i was having 1 of my 1st major surgeries at that time and thinking negative still.

to me ichanged with UNCONDITIONAL LOVE from my beloved hubby; his talking honestly, and pointing out i was complaining alot. best wishes my friend.

walktheline, i loved how youworded thigns above too. bettyg

Your experience is also a light for me, along with so many of the others on this forum.

It is my own Mom who is pointing out to me now, how negative and blaming my thinking has become.

Granted, some it revolves around things she does, but she loves me enough to stick with me and gently point it out.

It seems to be mostly around my family, not my friends here where I am. I still don't think my family truly get it, that I have a raging infection in my head that is dragging me down.

They still think that I can just turn it off its affects like a simple light switch.

It is going to take hard work for me, and lots of it, to grab this bull by the horns and subdue it.

Mentally "Well" people to begin with, have the luxury of simply turning the switch off when they are having a little "bad day."

Someone needed to address it, or I may not have noticed it. And like your loving hubby, I guess it is my loving Mother. My sister just avoids me.

I need to learn to take even the hardships with a positive reaction.

I had been talking to another gal on the Christian Lyme forum, who has encephalitis pretty bad. My heart goes out to her!

She struggles to see the good even in what others say to her out of genuine Christian love and kindness.

She mostly sees the bad, because of the darn infection eating her brain.

Now she has left the forum because even kindness comes across as offensive to her! Lord help her!

That is where any of us could end up! I need you all, and my saviour and all your possitive outlooks on this hideous disease ( on a regular basis ) to keep me from going under, but instead raise me above it!

God bless you all! I think I am going to be "Victori us"!

Post edited by: VicMac, at: 12/22/2010 09:57 AM

Post edited by: VicMac, at: 12/22/2010 09:59 AM

another afterthought on this all. i used to BLAME PEOPLE for this and that. thru my work training programs i went to, i learned this valuable lesson:

when did YOU give permission for this/that to happen?? I DIDN'T!

we can't change other people, we can only CHANGE OURSELVES! that was a turning point for me too vicki. glad my examples have helped you/others. they have me. hugs

bettyg, iowa leader

I've been avoiding this subject vicmac, because I am the negative nelly that everyone tries to stay away from.

I developed PTSD 3 months into treatment from a tragedy, and I have become even more negative.

I have informed everyone that I know that I no longer want to be alive. I am not suicidal, I don't believe in that spiritually.

I just DO NOT want to be alive any longer. This isn't the bart talking either.

Nobody knows what to say when you tell them that. They try to convince you otherwise, saying things will get better.

I've heard it my whole life and I'm ready to move on. I'm bored here, there has to be more out there.

All of my life's lessons have been slapping me in the face throughout my lyme treatment.

This disease does change you. It opens your eyes to all the ugliness in the world.

I've just seen too much ugliness when I was well. It's too much to deal with when you're sick.

So I'm sorry I can't help you with why we should all have positive thoughts and struggle to stay positive.

I think it's an individual's choice.

I ADMIRE YOU ALL THAT CAN STAY POSITIVE.

I want my journey to be done, that's all.

peace to you all