Today is one of the most "horrible" days I've ever had.

I have a 15 year old sister who I look up to-just cause her life is basically perfect-that is what it can be for a 15 year old.

She just doesn't want to take the time to listen and see what I go through or do things with me-

My mom and dad are more understanding but to me it looks like they try to put it off-so to say

I'm so upset and love them so much-but I feel like every time I bring up something that is hurting me-everyone starts fighting and crying-and I feel it's all my fault.

It doesn't make matters easier also that I'm having surgery for a mediport on thursday either-and everyone has always said what a big baby I am and can't take pain-but I'M SCARED....

Also, does anyone know of anyone in the area near dulles airport who has Lyme who is around the age of 21 like me??

Thanks for letting me get some things out-just would like advice or some support-even though I don't know most of you at all-it still helps to know people are there to listen....

Jenn
 

I'm so sorry you had such a horrible day and feel so unsupported. I'm not sure I can help you feel better, but I'll try.

I can relate to the perfect sister syndrome though. My sister tortured me until I was 17, and finally kicked her butt in front of her friends. We're best buds now, but that didn't happen until she got married and moved out of the house.

Your sister's only 15 and at this point completely wrapped up only in herself. I'd say the smart thing would be to tune her out, and look to Mom and Dad for support and to be there for you.

If your parents want to bury their head in the sand, perhaps you can sit them down and explain to them, symptom by symptom, what you are going through.

Keep a daily symptom log (which is a very good idea for your doctor and you to track your progress) and even show it to them.

Write down all the things that have now become major obstacles for you - getting out of bed, trying to go to a store, driving, etc. They may not realize the extent of the pain and panic you are experiencing.

I've never had a port, so I can't help you there. Tell your parents you are scared and you need them to back you up on this...

And if all this fails, please know that people here really care that you are so scared, and we're always here to talk to.

Big hugz for the surgery, and let us know how you make out.

------------------
Julie G.
___________
lymeinhell
 

our household was a little hectic, and we had a hard time udnerstanding the pain Lishka was in. It caused the boys to fight a lot.

Seemed like when she needed them the most, they were the "crabbiest" towards her....

....turned out....

they too had lyme. Not causing pain, but causing emotional stuff...

so...keep your chin up. You might have a whole sick family who cant have the capacity to deal with what your going through.

THATS WHY WERE HERE!

Lishka had a port put in. I will not lie, it is painful (and stiff neck) for about a week. Make sure to follow the doctors orders to ensure that you will be most comfortable. The pain will go away.

We will be here for you hun.

love
Auntie Theresa
 

I have a couple of sisters.

Had it been legal at the time.. when I was your age..

There were days when I would have tossed them in the river and hoped sharks would eat them.

But I felt sorry for the sharks.. so I didn't do it.

I don't know why it is sometimes we have to put up with their "stuff"... but we do.

I can't imagine with you feeling badly how much MORE difficult it would be.. and how much more emotional it would be too.

If you ever need the name of a good shark... just let me know. OK?

And you are having surgery?

OH NO! I would be scared simple if I were you.

Cause I am me... and I still get scared simple!!!

And I am too old to be so scared.. but I can't help it.

Doctors, hospitals, and surgery ARE scary!!!

What you are feeling is normal!

I happen to know that the worst part of surgery is THINKING about it before hand.

It makes me NUTS with worry.

But I have learned one thing.

Worry never helped!

It was ALL wasted energy.

If you can.. try to do something to distract you from the worry.

Paint a picture...

Or paint all your toenails different colors.

Read a good book. Watch a funny movie.

Write a poem. Sing a song.

Anything to distract your mind from the worry.

And keep in mind...

These folks do this stuff day in and day out.

To us it is scary... and facing the unknown.

To them it is a job they know well and do every day.

Plus.. from what I hear.. younger folks do MUCH better when having this procedure...

Dogs do quite well too... but I am NOT calling you a dog.

Not yet anyhow!

You might want to click on the box on the left of the screen that says Support Groups.

Check the ones in Maryland and look for one named National Capital Lyme something...

I think they are in your area. They may know someone about your age in the area where you live.

Not sure.. but it is worth a try.

I will be thinking about you and hope you will get back to us and let us know how you are doing.

OK?

Feel better soon.. little baboon!

Anyone with half a brain is scared of surgery. Since you clearly have more than half a brain, no wonder you're worried.

Don't be, though. I can't tell you how much easier life got for my husband when he had his groshong (also a chest port) put in. So much less pain and hassle than failing PICC lines! I won't lie -- there's nothing about this that isn't an epic pain in the butt--but you'll be fine.

Here's a site for your folks to check out, LoveyOnLymeCaregivers. It's specifically for people whose family or friends have Lyme -- gives them a place to talk and share information, experiences and fears. And I guarantee your folks are scared, worried, and don't know how to talk about any of this.

Anyway, you might want to just sorta mention this site to them, as a place where they can get some information they might find useful.

And as for your sister -- well, you know what they say. You can pick your nose, but you can't pick your family.

Let us know how your surgery goes. Best of luck.
 

I know I responded to some of your other posts about getting your port put in. I just wanted to pop up again and say hi (especially since I'm having a bad night and can't get to sleep ).

I understand what you're going through with your family. It took a long time for my family to even come close to understanding what I'm going through. I'm your age (22) and I've been dealing with Lyme stuff for over 7 years and my family still doesn't realize what's happening with me. They try, but they can't understand. I don't tell them what's going on with me a lot of the time because I don't want to seem like a complainer but that means that they just know less and less of how much pain I'm in (and how bad all the other symptoms are). It's hard. But there are great people who can offer the understanding and support that your family may not be able to provide.

And, as for the port surgery, I actually found it to be a very easy surgery to undergo. I had conscious sedation so I was awake but very fuzzy and foggy during it. But, I do remember vaguely what was going on during the surgery. I couldn't see anything happening below my neck because they put a sheet up and I really didn't feel anything at all. And, I didn't have any kind of neck involvement like Lish's mom mentioned so I didn't have a stiff neck, just some soreness that was mostly gone a few days after the surgery. The biggest thing for me was just getting used to it being there. I've had it for two and a half months and I'm still trying to get used to it. But, it's starting to just seem like part of my body and I mostly don't think about it being there, even when it's accessed.

I'm not in your area but if you'd like some online support from someone your age, I'm more than happy to offer you that. My e-mail address is [email protected] and my AIM screenname is arg7482. I'll offer what support I can and promise to listen.

I'm also organizing a retreat weekend for people with Lyme and their families. The first one will be in MA in November and there is quite a group of teenagers and Lymies in their early 20s. If you're interested, click on the link in my signature to go to my Yahoo group for it or e-mail me at my other e-mail address - [email protected] or click here to go to a post with more info.

Let me know if there's anything I can do for you, especially as far as support for the surgery goes. It's scary, I know, but it's not a bad procedure.

Peace and healing,
Annie

------------------
``The best way out is always through.'' -Robert Frost

Click to join Lyme_Camp
 

I can only comment on the having a teenager around part. I made the dumb, very dumb mistake of taking in my neice for the summer ( as I had last summer). I realized that they dont grow out of their self absorption very easily. Is there any way that you can send her home?

Ultimately, thats what I had to do wih my niece. If she wasnt sleeping, she was whining, or arguing with me, or eating CONSTANTLY and she NEVER picked up messes.. or she was on this here internet doing things she shouldnt. And, unfortunately for her, shes not allowed at Aunt JOdies house anymore until she grows up. She was screaming at my kids, youngest is 6. Uh uh.

As far as family concerns goes, I understand. To put this lightly, is there any way, for the time being, that u can just get them out of your life? Do you live alone or not with them, etc?

I've pushed off many family members, but in the end, I feel much better about it. Its not being mean or selfish cause you feel like it, youre fully justified.

I live in the DC area. The National Capital Lyme Association has monthly meetings. People are mostly older than you, but it may still be helpful. You can get their info under the Support Groups links.

I've actually been thinking of trying to get a monthly meeting together for "young adults" either 20's and 30's or 20-35 type of think. Something metro accesible in the DC area.

If this is something you'd be interested in, then it will give me a boost to get it going. Let me know.

-Aniek
 

My son has Lyme and has been in treatment for a year now. He is very close to your age. He posts on Lymenet off and on (user name is LazerOrca).

I know that he is networking with other LD patients his age through email and chat.

Feel free to email him at: [email protected]