lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I watched American idol and House last night with my daughters. Didn't like House at all. Not the usual show. The patient died, and i think it was uncharacteristic of House to let happen what happened. They just needed to do a show where a patient dies so the show won't be so formulaic. So they did. Not a good show!
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
I watched American Idol and then, of course, HOUSE, M.D.!! I love HOUSE! He has people die all the time. Now Grey's Anatomy a lot of people die on there. But, House has miracles and then some die. But, I think last nights episode had a good message.
Sometimes it may be something complicated, but it could be something as simple as staph. I thought it was stupid they hadn't tested for that or anything and she had to die, but still. Not one of my fave's, but I think the message was good.
I called my ortho today to get my appt. for my echo, but we didn't get a call back. I don't know why. They always call back. Unless he took his staff to Florida. He has a place there and sometimes takes the whole staff for a vacation!
Unless he was in surgery. I don't know, but I haven't gotten my appt. yet. So...
Well, once again I am so tired. I couldn't go to sleep last night and couldn't wake up this morning. Also, we get report cards tomorrow. My math has suffered a lot. I was so angry when I saw my grade. it was 12 points lower than usual. I don't know why. I am having a hard time processing all of it.
More than ever before. Also, I am having trouble readin and understanding what I read. I can't read unless it is completely silent. Which never happens. I can't here if more than one person is talking because to me it all blends in. It drives me crazy.
Well, I need to go study ALOT for my math test tomorrow. See ya!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Ok, my ortho is definitly interested. He has said all along he doesn't know, but wants to find out, of course. His office closes at 5 and he called 'himself' at 8 tonight and said he talked with my Id duck and he called Infants & Children (which is across the street from here and is where I go when I am sick) because neither of them knew a Pediatric Rheumy.
He set me up with a Cardio there and he is going to set up the echo and everything. And then I have to go to a Ped. Rheumy at UAB or Vanderbilt. He said to make sure we tell all the doctors to fax my stuff to him because he wants to follow my case.
He was even nice enough to ask about my bone bruise. I told him it wasn't better. He said it could take months, but he asked so...
Well, off to MORE ducks. I really don't want to go. But, I have to. That is going to be several days of school I will have to miss, and I am starting to do worse so I just want to do my best not to miss and work really really hard.
It is so hard for me to understand what we are doing in math and english. I don't understand the math. And we are breaking down literature in english. I can't do that. I am so lost in there. I just don't know any of it. We are talking about...oh my goodness....I forgot what it is called.
Things like hyperbole, ummm.....literary stuff....I have no idea. Goh.
Uh well, I don't know, I just can't understand any of it.
Oddly enough, I have a 100 in Psychology! I understand all of it. Because I know all of it! HaHa.
Well, I am watching American Idol Gives Back...it is very good so far. Amazing. Well, see ya!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Well, once again I experienced an anger outburst.
Same as usual. Got mad over something small. Got mad at everything after that. Slammed doors. Threw some stuff.(not big or breakable) then laid in bed depressed and cried.
Just like usual. Felt like everything should end. Tired of seeing all the stupid ducks who have no idea what is wrong with me. All that stuff.
The thing is, I know it is happening and I don't want it to, but I can't control it. It is very strange. It's like I am watching it happen and can't do anything about it.
Well, I really need to study, but I am SO TIRED. My eyes hurt and I feel like crap. Everything hurts. I am going to have to wait til morning and study on the bus. A decision I will regret, but I can't help it.
My mom and I got in an argument because she has to make my appt. to see a duck and then he is going to arrange the echo. So he prolly just wants to ask questions and such I guess ( a topic I am stressing over and having bed anxiety about.) And I can't decide whether to go in the afternoon with my dad or morning with my mom.
I hate going anywhere with my dad. I don't feel comfortable. But, going in the morning means missing school. Something I know I don't need to do, but wish I could do because I hate it and I am so tired of it.
Of course, I got mad and said 'I DON'T KNOW' angrily. And she got mad right back.
Honestly, I hate meeting new people, being social, going places, anything like that. So you can imagine how hard it is for me to go to another duck.
At least this one is right down town. But the one afer that is going to be over 3 hours away. NOT looking forward to that.
Well, I really need sleep. I can't hold my eyes open any longer.
Thanks
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Ok, I had a very very rough night last night. Anger, depression, sleepiness. It went away eventually like always.
Well, today on the bus (and most other days) I was listening to music and had my knees propped against the back on the seat in front of me.
I could feel it starting to tingle like usual, it got worse and worse and when we got to my house I told my mom I wasn't getting off.(she drives the bus!) I asked my friend if my foot was moving. I was trying and I couldn't move it up and I could just a slight bit down. I couldn't feel a thing.
It had went all the way up my left leg to my lower back. Had I continued to sit there it would have been my whole left side probably.
Once again, I got up and I couldn't walk or feel the ground with it. I couldn't feel enough to walk. And then the pain sets in. It hurts X-TREMELY BAD. It hurts more in the back of my knee. And it hurts WAY more if I don't completely relax my muscles and not move it at all.
Why does it do this? Anyone?
Before I sat down on the bus, I had this really weird headache. Different than usual. My head hurts to push on the right side above my ear about and inch toward my forhead, but my headache was right behind my ear about an inch. It stills vaguly hurts now, but I have never had that before.
Well, I guess I will be going. Thanks
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Do you have any burning in your joints or muscles?
Thats the symptoms that I had as a teen.
In my legs they would burn, and I would wake up and my legs would be in lots of pain.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Well, I can't that I do. I don't remember if I ever had, but to my knowledge no.
My joints and muscles hurt and get really sore. And my muscles get weak, but no burning. Just tingling. And numbness. I am not really sure though. I can't really remember.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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I haven't posted in a little while but I've read all of your posts that I could find. I am really interested in what information you heard about the LLMD in Alabama that you mentioned. I haven't seen any comments about him here, so would you please tell me what information you heard about him and where it came from....guess you could P.M. me if you don't want to share it in this post.
Sounds like you're getting some very good advise here, support and ideas from some very smart people. Maybe if you print these posts out and then high-light them (I like yellow), you could decide on what info you want to act on, etc. and then get started on prioritizing things and moving forward in whatever direction you choose.
Also, I realize you can't just call up and get all of your medical records but signing releases for all of your records to be sent to your main doctor would be very helpful. Most referrals do send back a report to the referring physician, but just in case, having the lab values and results (everything you listed that you've had done) could help with baseline values, etc. Personal experience - 2 of our physicians moved or stop practicing, so if I had not had copies of these records, I would never have been able to get them and they were important.
Also, I want to say that I am certainly not pushing a Lyme diagnosis on you but this would probably be an easy diagnosis to rule out by a consultation with any LLMD. This may end up saving time and money in the longrun.
The advise here has been heart-felt and very helpful. Hope you follow through on having your heart problems checked out ASAP. Please continue to keep us updated with any new information.
Being 15 is hard enough all by itself, having an undiagnosis illness that just seems to get worse and worse, is just not fair to any 15 year old. Just remember there is always light at the end of the tunnel, some days may just be a little sunnier than others. Hang in there....
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I live in lower Alabama, along the Gulf. I saw, for one year, a doctor here that I was told was llmd.
He does understand chronicity and use the antibiotic combo's, but he was investigated once as many llmds are.
AFter that, he has a tendancy to withdraw treatment before your symptoms resolve. This disqualifies him for llmd status in my opinion.
And after I got my medical records from him, I noticed that he "doctors" records to make sure he says you did not have symptoms and you had a trial off antibiotics.
I left him becuase he wanted to take my 6 year old off her lyme treatment. ONe month he acknowledges she is having symptoms because we report them, but at the same time he says he wants to do a trial off antibiotics the next time we come in.
I argued that with him, and he bluntly stated that he had no intention of spending another 10,000 dollars of his own money to be defended in court again, so he has to demonstrate to insurance carriers that he tried to stop antibiotics.
The next time I came in, I was armed with a symptom list and a plea not to discontinue her treatment. With great fervor, he suggested that I was making up symptoms, and that her knee pain and fatigue could be anything. I reported that the last time we tried to take her off, just two months prior, she went downhill very far in the course of five days.
He suggested the next time I come in, to bring my husband so we could clear up the issue of my daughter's symptoms.
I never saw him again. I could barely breath when I got to my car, the anger was so intense. I wanted to beat his face. His arrogance, the insults, like I WANT my child to go through this.
Now, don't think I'm crazy, but I have since then run into several people that I would swear have lyme, and I know won't travel out of town to see a doctor. I have referred them to this doctor because he does do the Igenex testing and check for all co-infections. He is a good starting place for many people, but I warn them that this doctor will NOT go the long journey and treat them until all symptoms have resolved.
That is the story on the "llmd" in lower Alabama. He has his usefullness, and then you have to move on from him. AS for me and my children, I will never set foot in his office again.
Also, his wife is his secretary, and she doesn't return phone calls. When you get frustrated, the doctor gets really snotty with you. AFter all, it is his wife we are talking about. And the wife can be such an air head.
mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
Yes, thanks. That is the story on the LLMD in south Alabama. That's what I have heard. Gets patients, but drops them soon after. Something like that.
Well, all of my records have been faxed to my original Ortho here. He has done all my ferrals and all of my stuff has been sent from my other docs to him.
All of my future stuff will be faxed to him as well because he said he wants to follow my 'mysterious' case. I will give him credit.
He fixed my foot. And he does seem to care more than any of my other doctors. He called me at 8 at night. 3 hours after his office closes. He calls all my doctors and discusses my case with them and my best options. And he does any referrals and he does all my blood tests.
At first I didn't like him. It took him a year to fix my foot. BUT, he did take all the steps first. Over the counter meds, prescrition, x-ray, bone scan, cast, cortisone shot, and 2nd opinion, and a nerve test. And he did my surgery and it worked! So, he is better than I thought!
Plus, he talks with a funny acsent that I like!
Well, I forgot what else I was going to write.
Ok, today, he had a social gathering at school (just the H.S. if they have been good all week.) And my friend forced me to go. I didn't tell her I didn't want to.
I absolutly hate going. Way to many people. And honestly it isn't that many people. I just hate being around a lot of people. Sometimes even my classroom is to full.
Well, I got in there and one of my friends didn't come. I tried so hard to convince my friend that we should leave and go find her because I knew she was still in her class and they weren't doing anything because today was Senior day and everyone was gone on fieldtrips.
I begged. I wanted out of there SO BAD. I got really hot. And I could feel my heart beating and my head started feeling weird. I really wanted out, so finally I just left her and went to a class with 4 of my friends and I was ok again.
I think I have like a social fear. Also, we have 3 lunches in one period. I have 3rd lunch. Well, with so many people gone there was room in our lunchroom for 2nd and 3rd to go together, so I got to go early! Well, way to many people in there. I get the same feeling.
Anything I here I feel like it is about me. I always feel like people are staring at me and watching me and talking about me. I get really scared. I hate walking into school or down the hallways, in the lunchroom, social gatherings, anything like that. Public speaking, just being around people at all.
Even standing in a group of like 5 or 6 of my best friends. MY mind wonders and I don't pay any attention to them. I always feel like I am in a box. And I want to be alone. I just don't like being around people at all.
WHAT IS WRONG???
Anyone else have this?
Also, I had an anger outburst at my little sis. She was staring at me in the car on the way home and she would look at my 'window seal'. That's what she said. She LOVES to do that because she is not 'looking AT me' just NEAR me and she knows it annoys and irritates the crap out of me.
I put the sun thing over me where she couldn't see and warned her I would get really angry realy easily if she didn't quit. My dad never told her to stop or anything. I told him I would hit her. I even wanted to jump out of the car. But, I am NOT keen on killing myself so...I didn't.
We got home and she continued on and pushed me to far. I knew it would happen. And I went off on her. I yelled at her and hit her once. Not to hurt her, but I pushed her onto the couch so she would listen to me. I explained to her what her annoying and angering me does. I told her I would get mad. She wouldn't listen.
She locked my bedroom door while I was walking my dog so I couldn't get in my room. And she starting screaming when my mom got home claiming I was killing her! I got yelled at all day. She continued to do it for several hours and followed me around. She lay facing me and the wall on the couch and couldn't even see the t.v.
Claimed she was looking at the spots on the wall. Yea...sure. DROVE ME CRAZY.A normal person would be annoyed and angry, but when you do that to someone who has anger issuses you have to expect it. I tried to hold back but she pushed me to far and I told her that. She thought it was funny.
So...I told her I was sorry at the end. She could care less as long she accomplished her job of driving me insane. So...
Besides some leg, muscle, and some weird pains in my stomach that is about it. A headache here and there. And REALLY tired. I am going to sleep ALL weekend! Thank God for weekends with NO SCHOOL!!!
I don't remember if I told you guys I have an appt with the cardio next Wedn. at 9:30 A.M. I will keep you posted on what he says. And how we proceed.
Well, I am exhausted and my whole left leg is numb from sitting here so...talk to you later and have a great weekend. Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I have three daughters and this sounds very familiar.
Now, consider this.
You are very intelligent, but acting unintelligent.
You see, you are LETTING her have the power over you. That's right. YOU are giving her more and more power as you insist on your response.
Try this next time, NEVER notice her. She will stop pretty fast.
And eventually, rather quickly, she will loose the desire to try to stare and you and get your goat.
Also, you will find that all of a sudden, it really doesn't bother you to be looked at.
Give it a try.
mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Oops, one other, much more important thing.
They lyme doctor in lower Alabama is NOT a total waste of time. IF that is all you got, then you need to got there. He WILL do the appropriate testing with the appropriate labs, and be very helpful in diagnosis. He will begin treatment.
It will be awhile before he starts to drop you, and in that time, you can investigate other llmd possibilities.
But getting that initial testing is very important, and if lower Alabama is the only place your parents will take you to begin with, then you insist they take you here.
The world is not black and white, and you shouldn't cut your nose off despite your face.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Sounds like very good advice from Lymewreck Christi*!*! I would do it!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Well, thanks for calling me intelligent, but I HAVE TRIED NOT PAYING ATTENTION SO MANY TIMES!
That makes her do it more and more. I am smart enough to know to ignore her and it will stop. Well, that is NOT always the case.
Also, you have to remember, I try really really hard to control myself, but it always seems to come out. It is something I can not control. I try. I really really do, but it never works. Its like not being able to control depression. Or being able to control pain. I can't do it.
I didn't get up til 1:30 today. I wouldn't have gotten up then, but I had to. As soon as I walked out of my room that was the first thing she did. I will go outside or something and she follows me everywhere.
This comes back to the 'locked bedroom' door thing so many people got angry about before. But, that is one reason I do lock my door. Also, I like to be alone. I don't like being around people. So...
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I have found this to be universally true with children, especially young ones.
When a child is used to getting a desired response by his or her actions, and then she doesn't get it, that only means one thing to the young mind.
It means that she has to try harder, and harder.
It takes a certain period of time before the child gets the message that the previous response is NOT going to ever happen again.
If you are used to consoling a baby that is not sleeping, and then you decide you want the baby to console itself and learn to sleep through the night, this is what happens.
The first night you don't go in and pick up the baby, the baby will scream probably to the point of messing the diaper and throwing up. The child just thinks that she is not yelling hard enough, and continues to yell.
The second night you try the new method, you might think the child will have learned the lesson you desire.
But, no so. The child thinks that he had to cry very hard the night before, so that is what she has to do this night as well.
But the child does not get the desired response, again!
On the third night, the child will cry slightly less. ON the fourth night, there will be a little protest from the child, but by the fifth night, you are home free.
Your sister will try harder for a certain period of time, thinking that is what is going to be necessary. When the desired result does not happen, she will eventually get the message. But you have to be willing to persevere LONGER than she is. That is the trick.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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I have been trying that for a while now. I heard it somewhere or something and tried it one day. Which it worked the first time. But, now it doesn't. And little things bother me more.
But, I feel ok right now. My friend across the street had a bon fire. My little bro and friend and her and her dad. We cooked smores and just sat there.
My hearing hasn't been great lately so I sat there the whole time staring at the fire not even listening. It was actually very relaxing. I was thinking of how fires are like life. I was listening to chirps and crickets and looking at the stars.
It was relaxing. A little cold when the fire burned down, but I like just sitting there not moving and I never said a word. Ever once in a while I would here them talking about how I was staring straight at the fire not saying anything or moving.
I would recomment this! Except then they laid on the ground in sleeping bags and all I could think of were ticks! I wasn't worried though. I didn't care if one got on me. Not like usual. Because I know what to do and what to look for.
I did check after my shower. I felt because they were sleeping out on the trampoline! I don't like sleeping away from home because I like to be in my own bed where I can feel comfortable. Plus, I don't like being around people. So, I left.
But, it was relaxing for about 4 or so hours that I just sat there doing nothing. I am hurting more today though. I woke up late and I am still tired and I did something to my neck again. And the rest of my body is hurting.
Also, my stomach and abdomen hurt when I am doing anything but sitting or laying. I tryied go somewhere with my mom, but I got a bad stomach aceh and got sick. And a headache. It has been one of those bad days. But, I have been really quiet today. I don't know why.
Well, I can't stay awake much longer. Last night I dreamed my left leg started turning black and hurt really bad and had to go to the hospital and have it scraped off and have skin graphs. So, I am not looking forward to going back to sleep. But at least I know I hit REM sleep. The 4th stage that is required. But, I am still tired.
I have been worrying already about the doc. appt. I have Wedn. I can't but think about it. I hope something shows and I can get at least an anwser. Not for everything I know, but something. But, then I hate going to new doctors. My ortho is ok, I have been going to him for about 4 yrs. so I don't mind, but I hate going to new people who don't know me and can't help me.
So, I am scared and worried, even though, I know, I shouldn't be.
Well, I am very tired and I am going to sleep. Bye.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Come on! Get some help! You are smart kid and your parents obviously love you, so get them to see that finding a way to get you tested via igenex and then treated by a LLMD will be the only way for you to have a shot at life again. You're wasting time. Valuable time. A rhemy isn't going to do $h!t for you, even for the pain. All they like to do is hop you up on anti depressants, which, in my own experience and in my reading of other peoples experiences, doesn't come a mile close in touching the pain. From what you describe Christi, it sounds like you are going down hill fast. Do you know that the complete numbness in the one leg is a nuero symptom? And it doesn't get any better, without treatment. It sucks. It all sucks! Treatment and doctors are very expensive, but find a way Christi, find a way! You can do it Christi, you can do it! You are fighting for your life at this point, so give it all you've got. Use the resources you've been offered.
Sitting around and talking about all of this isn't going to get you better.
Take Care Christi, K-lyme
Posts: 227 | From CA | Registered: Apr 2004
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
christi! enough already! get yourself to an LLMD, even if it's the doc in lower alabama to start - so much better than nothing! lots of people have offered to help you - take them up on it! it's frustrating to read post after post, knowing you're still not doing much to help yourself. i know you're only 15 - and i can't imagine how hard this must be for you. BUT. there ARE things you can do, people who have offered to help you get the assistance you need right now.
so, go to it! lyme is nothing to fool around with.
posted
To dream of blood from one of the online dream dictionaries I use
Blood
To see blood in your dream, represents life, love, and passion as well as disappointments. If you see the word "blood" written in your dream, then it may refer to some situation in your life that is permanent and cannot be changed.
To dream that you are bleeding or losing blood, signifies that you are suffering from exhaustion or that you are feeling emotionally drained. It may also denote bitter confrontations between you and your friends. Your past actions has come back to haunt you. Women often dream of blood or of someone bleeding shortly before or during their periods and when they are pregnant.
Don't know if this of any help but thought I would post it for you.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
Ok, thanks. I know this and I am sorry for not doing more. I am going to the doctor Wednesday. That is a start. Isn't it. I got out of the medical loop for a year and I jumped back in a month or so ago. Ok. I am going to doctors and one in particular is trying his best to help me.
Right now, I have to be worried about my heart. Obviously if my heart don't work I can't do much about the rest of everything. I have told my mom and everyone about everything. I don't know why I am not moving faster. I am going to a doctor like every week.
That's all I can do right now. I am trying. And they are trying. So far, they haven't said I was crazy. They just said they can't find anything, but they are still looking. At least I have that. We didn't say anything about Lyme to my ID duck because that was the last time we were going to him.
He was a butthole. But, we have mentioned it to my Ortho. That's why he is sending me a a few more doctors. To see what they think. He is the only one trying to figure it out. But, at least he hasn't given up like the others.
I know it must be irritating to read my posts and they all same the same thing. "I feel like crap and I am tired of feeling like crap. And I am not doing anything about it."
I know. I'm sorry. But, I am doing everything I can. I am trying.
Last night sitting by that fire, I was thinking about everything. About not being able to do stuff anymore at a certain point. That eventually I wouldn't be able to do anything. About how I was going to feel. I feel terrible now. I don't even know how I keep going. But I do. Somehow.
I just wonder what it will be like when it all hits and I just crash. Believe it or not, I have never been to the ER. I never even went with my brothers or anyone. Never set foot in one. What is going to be like when it all hits and I have no other place to go.
If it is bad now, what will it be like in a few months. A year? 2 years? What if I don't make it that long? You never know what is going to happen. So try to enjoy every minute of life even if you have 50 years of life left, because you never know.
That is what I was thinking sitting by that fire. It was burning big at first, but then it goes down. Sometimes it came back up. Sometimes we had to help it back up. This morning it was still flaming, but sooner or later it will die down. Whether it goes itself or we put it out, it will die sometime, just don't know when.
Exactly like life. That's what I was thinking. Just wondering how everything works. Why stuff happens. Everything. And it is weird thinking about things like that. Because there is no answer. But, of course, you think there has to be. There HAS to be an answer for everything.
Or does there?
I don't know. Well, I am going to go. I have to work today .
And thanks for sharing about the dreams and blood. Very interesting!
Thanks.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
LYMEWRECK36 ""The lyme doctor in lower Alabama is NOT a total waste of time. IF that is all you got, then you need to go there. He WILL do the appropriate testing with the appropriate labs, and be very helpful in diagnosis. He will begin treatment. But getting that initial testing is very important, and if lower Alabama is the only place your parents will take you to begin with, then you insist they take you here."""
K-Lyme ""Christi, Come on! Get some help! You are smart kid and your parents obviously love you, so get them to see that finding a way to get you tested via igenex and then treated by a LLMD will be the only way for you to have a shot at life again. You're wasting time. Valuable time. A rhemy isn't going to do $h!t for you, even for the pain. All they like to do is hop you up on anti depressants, which, in my own experience and in my reading of other peoples experiences, doesn't come a mile close in touching the pain. From what you describe Christi, it sounds like you are going down hill fast. Do you know that the complete numbness in the one leg is a nuero symptom? And it doesn't get any better, without treatment. It sucks. It all sucks! Treatment and doctors are very expensive, but find a way Christi, find a way! You can do it Christi, you can do it! You are fighting for your life at this point, so give it all you've got. Use the resources you've been offered.
Sitting around and talking about all of this isn't going to get you better."""
CHRISTIE - PLEASE RE-READ BOTH OF THE ABOVE POSTS
Exactly what I've been saying. I didn't think Lymewreck36 was discouraging you from going to the LLMD in Mobile. Everyone has different experiences with the doctors. Yes, my experience with him was more positive but it was also the ONLY option that my daughter and I had at the time. I know your parents care and want you to get better but you've stated what a hardship it would be to go there for an evaluation. It really is the closest and most convenient option that you have. It's not near as costly and time-consuming as others have had to go through i.e. N.C., Florida, PA, etc.
So here's the offer again, please accept anyone's offer to talk with your parents, help with the arrangements for an appointment and get the ball rolling. School will be out in just a few weeks and you can have all the details worked out by then.
Keep the heart check-up appointment, make sure your records are with the Ortho doctor and get a copy for you to keep. If some emergency happened over a weekend, you wouldn't have any records to back up all of the tests you've have. Even the Cardiologist probably would want to see these records.
Ok, nough for now. Hope you're feeling OK this weekend and ready for school tomorrow.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I think? people are forgetting this is a
15 year old kid you are talking to.
It is not registering with her, most likely because she is a 15 year old kid, I remember when I was 15.
If you want to get a message to her, ask to speak to her parents.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
Thanks, that's what I wanted to read after I just had a fight with my parents.
I was supposed to go to work, but I have felt worse lately. Everytime I try to do something my stomach starts hurting really bad. I don't feel good and I get a headache. And I am so tired all the time. Like out of it.
I was standing in a daze in the kitchen and my mom asked what was wrong and I said I didn't feel good. Well, my dad got mad because he was ready to go. I was going to let it pass and go with him but he got mad and left without me.
He was no idea how I feel. I wish they did. So my mom and little sister starts to leave and I asked where they were going and she said they were going to get new dresses for church. And I was going to say ok.
But, she "and no you can't go. If you don't feel like going to work you don't feel like going with us."
I didn't want to go. I start feeling worse when I go places and do stuff. But, she that first and made me so mad. She was going on and on about how I don't feel good and so on so I started crying and yelled at them to just go away and leave.
That's when I hit my bathroom door. Cracked it several times. But, I didn't want to hurt myself or the door so I quit. And got it together.
I know they care, but they have NO IDEA what I am feeling or going through. I NEVER feel good. I can't help that and they don't understand. I am sick of people thinking I am fine just because I look fine. If only they knew what was happening inside. They would understand if it were them.
Well, anyways I haven't spoken since then. They are mad at me. I just wish they knew what I felt like all the time.
And, no, I am NOT ready for school tomorrow. We have about 5 weeks left. Thank God. But, I am going to the University of North AL in July to take Psychology for the Early Scholars Program and then I am taking afternoon classes during the fall and spring. They pay for 5 credit honors for free! So...
5 more weeks and I will be a Junior! Yay! but, something tells me it won't be everything I hoped it would be. I wish Wednesday would come. I want to talk to the doctor and find out what is going on. I have been trying to think of an adult I could talk to. I know what I would say and everything. I just don't have anyone to talk to. I figure everyone keeps pushing me to, I have one but I hardly ever get to talk to her or I will be late for class.
But, I am looking for someone to talk to. I am going to burst if I keep holding all this is.
Well, I have to go get ready for school tomorrow. And go to bed EARLY.
Oh and what does that last comment mean?
I hope nothing negative. We are try-to-be-positive people on here and I can't take negative comments again. I tend to be glass half empty and working on being positive so I will disregard until I figure out what it means.
And thanks to the person who realizes I am 15. I try telling people that, but it is like no one cares how old you are we are all the same.
Well, I can't take much more of this so I need a long hot shower and a warm bed, bye.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Okay Christi...I do realize you are only 15 years old.
I have an idea.
Call Igenex 1-800-832-3200 and order the test.(It doesn't cost anything to order it)
It may not make it to you by Wednesday, but I am sure this doctor's
Visit will be followed by yet another, and another.
The test is 190.00 for IgG and IgM Western Blots for Lyme (test 188 and 189).
Do you have some money saved up? I realize that you are saving for a motor bike, but.......
I think this is WAY more important.
Maybe your parents will pay half.
Take the form to one of your Doctors...Have them sign it and then ask them to pull your blood.
Remember, the docs are supposed to work for you.
The results will be sent to the doc ordering the test, but you can get the results from them
And then go from there.
It isn't the best answer, but it may be a "happy" medium for all involved.
I am praying that your heart is alright and that you get something good from your doctors visit on Wed.
Take a deep breath.. You can order the test....
You can have it sitting at your house so that when you are able,
You can have any doctor sign it and pull the blood.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I don't think age should matter. I know you guys know I am 15, but it shouldn't matter. I should be able to handle anything. I just get lost sometimes. I don't know how many days like today I can handle.
It didn't seem bad, but it was. I haven't felt very good today for some reason. And I have been having stomach pains for no apparent reason. And headaches. And just feeling like the sky is falling or something. I just have a bad feeling.
BTW, I tried talking to my mom. She can't seem to get passed the joint pain. I told her that was so 2 years ago. If it were just that I could live with it. She said well what can't you live with.
I said, the knee, wrist, elbow, hand, finger, neck, back, stomach, chest, and head pain, the depression, numb legs, so many doctors, mood changes, and everything else. I told her straight up. She really didn't say anything. But she did say she would talk to the doctor about Lyme.
She says that everytime. I told her I was tired of seeing them. It had nothing to do with my high ASO or arthritis or anything like that. It is something way more than that.
That's what I told her. It is hard for me to talk to her. I looked down the whole time. I got really scared, nervous, and hot. After a while I felt like I wasn't getting anywhere. I went to my room and cried. We have been fighting all day. I don't know why.
I just don't feel good. I feel like something is really wrong. Like I can't last much longer. But, really nothing MAJOR has happened. I haven't had to go to the ER or nothing. So, I guess that means it can't be that bad YET. It's like waiting for a bomb to go off or something.
Well, I am sick of talking about being sick. I am tired and don't feel good, and worst of all all, I have school tomorrow. Yippy.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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quote:Originally posted by Geneal: Okay Christi...I do realize you are only 15 years old.
I have an idea.
Call Igenex 1-800-832-3200 and order the test.(It doesn't cost anything to order it)
It may not make it to you by Wednesday, but I am sure this doctor's
Visit will be followed by yet another, and another.
The test is 190.00 for IgG and IgM Western Blots for Lyme (test 188 and 189).
Do you have some money saved up? I realize that you are saving for a motor bike, but.......
I think this is WAY more important.
Maybe your parents will pay half.
Take the form to one of your Doctors...Have them sign it and then ask them to pull your blood.
Why don't you confide in the school nurse?
Geneal has a great idea there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Christi,
What did you think of the Igenex idea?
Maybe this is something you can discuss with your mother.
Maybe you have enough money to pay for the test yourself....
This is very important....
Try to take a deep breath.
If you get what you need/want you may need to use honey instead of vinegar.
Try to not push the people away that you need to get help.
That creates a whole new set of problems....for you and for them.
You have to keep reminding yourself that they don't understand.....
It is a difficult disease for people who have it to understand....so ecompassing and consuming.
I will continue to pray for you and your situation....
Keep asking God to show you the way....He Will!!!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Christi,
Please give this serious thought. YOur parents might be very furious if you give your address out over the interent, but consider private messaging me your home address. I will carefully craft a letter to your parents.
Or, I can craft the letter and private message it to you, and you can give it to your parents. That way, your identity is preserved, and they won't get mad at you giving out your home address.
I don't know, however, how long a private message I can send. Does anybody know this? How long a message can I send?
I will work on crafting this message as I get time in the next few days. Someone let me know how to get a very long pm sent.
I was 15 once, with undaignosed lyme, and my parents pushed me away. They saw me as "the difficult child," the one that always made the home unhappy. No doctor could find anything wrong with me, and my parents were not the type to talk about stuff.
I understand Christi's problem. At fifteen, it was nearly impossible.
But when you are sixteen, you can drive yourself to the doctor, and have doctor/patient privacy. IT is just getting your parents to use their insurance to pay for visits at that point.
Order the Igenex test Christi. I'll work on a letter for your parents, and let's get this testing over with.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
christi, i have an idea for you..... this is off subject of the illness but then again it isn't.... I believe you can be the next best "AUTHOR" i read your messages and i go to a place with all kinds of emotions like if i was reading an awesome book sold in stores... Writing your story can be a wonderful way of getting your fears and thoughts out. i was dx with multiple sclerosis at 29 years old and now i may have lymes disease and since i was dx. i started writing my story... a great hint about writing your story is sit down and write when you feel the emotion or when you are in the dark place or scared or even happy.... one thing i would start with is go back to all of your post on this forum and copy and paste them and save on your computer and organize them.. i bet you will have a half of book of the start of your story!!!!! you do not have to spell correct or put the right puncuations in, i have a dear friend who writes and her and i can help you put it together if one day you would like to publish your story..(A MYSTERIOUS ILLNESS IN THE LIFE OF A 15 YEAR OLD) just an idea on the title........ please let me know what you think.. hugs to you>>>>lisa
Posts: 40 | From ky | Registered: Apr 2007
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Something isn't right here. SO MANY people have offered help in myriad ways and as far as I can tell, none of the advice has been acted upon.
We are either being snoockered, or this "15 year old girl" needs serious counseling. Either way, I think all the efforts of caring folks here have not changed a thing for Christi. Until she takes charge of her situation and takes up the offers of help, nothing WILL change.
Christi, have you mentioned to either of your parents that there are adults on LymeNet ready and willing to speak or write to them? I have seen nothing here that suggests you have. If not, why? You have used excuse after excuse as to why you can't talk to your parents. Why not print out this thread and leave it on your kitchen table or somewhere they would read it.
I told myself I would not respond to this thread again. I am a compassionate person and try to be positive but no matter what a person's age is, ultimately if change is to occur, they have to make the moves towards change.
And Christi, if you are as sick as you have reported here, you can forget going to school this summer, riding your bike, participating in any activities, including working with your father. Lyme disease is serious. Left untreated, it can ruin your life and is not something to just complain about.
I wish you well, Janet
Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
tnjanet, i'm sorry but i have to say that was a little too much... tough love i know!!! but we all are going through this together and we all will deal with it different..... you have no idea what christi is going through at home.. not saying this is happening but what if her parents are abusive and this is her only way out and maybe we are all she has.... whether she does something about it or not she needs us to support her anyway.... i have to say that her last post was scary and all i heard was a child crying out for someone to listen not judge and all i know is i will be the one listening.... she sounds like she is close to saying good bye to this world and if all she has is us to hang on to by god i am going to be here for her..... sorry but just my opinion.................... love all of you i promise>>>>>lisa
Posts: 40 | From ky | Registered: Apr 2007
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I am very glad you will be listening to Christi's sharings of her situation. If you have read all of her posts, they have gone on for well over a month and she has not acted upon any of the VERY well-meaning and good advice she has been given.
After you have been here a bit longer, you may understand why many of us are skeptical. We can only offer help so much and then the rest is up to the one who is asking for help. I haven't noticed Christi actually asking for help, but just venting.
The medical thread is not for venting about one's day and all the things that were wrong with it. If everyone here posted facts about their days here on the medical thread, the moderators would probably have to start a new thread....something like "All the problems Lyme caused me today" and it would overload the system.
We are here to support each other, exchange information regarding Lyme treatment and where to get it, post new treatment protocols, etc. Yes, we are here to listen, especially to people having a meltdown or just having a very difficult time.
You can go back through older threads here and I doubt you will find another one that goes on and on like this one has. However, if you really want to listen to Christi, why not PM her and offer to do just that. Then she can share with you all her problems and excuses why she can't get help or talk to her parents. That way, the general population here won't get sucked in to this ongoing diatribe.
Glad you are here, Janet
Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
A QUOTE FROM CHRISTI IN MORE OF HER POST.... if anyone wants to really get to know christi go back and read her post and what i seen was someone who jumped in and supported others and then having to deal with her own illness......
posted 18 April, 2007 07:52 PM --------------------------------------------------------------------------------
I just wanted to say welcome and I joined 3 months ago. This place is really great and there are a lot of people armed and ready to help you out. It is a huge support system.
I have learned a lot from the people on here and they have helped me a lot. So, thanks to them and I hope you find everyone as helpful as I did!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi
Christi, sorry for having to use one of your quotes but i think we need to be checked every now and then about what this forum is truly about.... i opened my mind to what they were saying about you not taking any advice and i went back on all of your post in the past and it sounds to me you have done everything possible for a 15year old..and don't be sorry for it..please.
i do agree that we should go on the general support and please do not be discouraged from letting us know what you are going through.... this is an excellent example for the new ones who come here and see how we will treat them..especially the undiagnosed who are just so exhausted with the medical world... i have been there i just wanted to crawl under my covers and never peek out.. what i seen in your post was the classic signs of processing a devastating illness..... you had questions, you supported others when they posted, you had fear, you were angry, another thing to consider is the HUGE GUILT you have on your shoulders because you probably feel like you have put your family through too much and i have to say THIS IS NOT YOUR FAULT... DO NOT BLAME YOURSELF, YOU DID NOT ASK FOR THIS..
you have my support hugs from lisa
Posts: 40 | From ky | Registered: Apr 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
For TNJanet and others who are "skeptical," I have been following Christi's posts since the beginning. Christi has approached her parents on several occasions about lyme disease, only to be discredited and rejected for her opinion. Her parents are following other leads, and when Christi feels like she can't take anymore, she often feels pushed away by them.
I lived this as a young person undiagnosed with lyme. It is exactly the same feeling as living in a cage.
An under-age child is powerless under her parents to direct her own medical care.
How many of us have lost friends and even spouses that wouldn't believe us. How many of us have lost insurance, jobs, hobbies, passions.
And then how can those of you who suffer with this expect a 15 year old girl to get this situation under control with out her parents help.
Christi has asked for help with herbal remedies because she can act on that without having to fight her parents or other adults. Example....eating garlic.
Example two, I suggested she order the three free lyme borchures on lyme disease, getting several copies. I sent her the weblink to order. She ordered them and sat down and shared them with her parents.
Example three, one of her most recent posts in this thread describes her having a converstation with her parents on the subject of her illness, trying to convince them it is more than her parents realize. She describes the difficulty she has with communication very well. She should be a writer.
She is so genuine it is hard to believe someone might think she is not. She tried to paint the big picture for her parents, the clustering of symptoms, so they would stop looking at just one body system and seek an answer to the entire thing.
From time to time, it does appear that her post would be more appropriate in "general," but many times her long posts begin with a medical question, and then there are so many responses it just gets a life of its own and becomes very long.
I once read a VERY long post in medical questions that included jokes, lyrics, personal stories, and an entire host of other material as the thread grew.
Nevertheless, Christi should post daily reports in General when possible.
The point, however, is that if you don't understand Christi's "lack of action," then you were not sick as a young person, you had unusually understanding parents who think outside the box, and/or you do not have teenage daughters of your own.
I realize I am opening myself up to attack by making this defense, but it has to be done.
Things Christi needs to respond to.
1. Have you shared the information about the lyme doctor in lower Alabama with your parents. Do not, at this point in time, include the discussion of him possibly stopping treatment. Just get there and get the testing done.
2. Do you want me to fashion a letter to your parents.
3. Have you confided in a school nurse or counselor and asked for a go between with your parents to push the idea of appropriate lyme testing.
These questions have been asked, and as far as I can see, they have not been answered. Whatever is holding you back from addressing the three above issues, please post an explanation so people will stop accusing you of not taking care of them.
I can collect some links that explain why lyme testing is inaccurate for you to present to your parents. This will help explain to them that just any old lyme test where you live is not going to be good enough.
Have a good day Christi,
mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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quote:Originally posted by paulamea: Would you please post the web-links for the lyme info you sent to Christie and also those about the testing. Thanks
Why??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Well let's see now, i just re-read some of Christie's post from the beginning again and found about 5 links that I had not paid attention to that were great. I am not as current on the lyme info as I was about 2 years ago so would very much appreciate up-to-date info. I hope to present a program at the school PTA at some point and have been gathering this for a while but, like I said, lots of my stuff is older and current info would be great. But if you'd rather not post it here, I can continue to search and found it. Guess I was just asking for a short-cut..
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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posted
Hello Christi. I was treated poorly by a few when I first came here as well. This forum is just like any other group in life.
You have the nice people, mean people, incompassionate, and the compassionate. Again, just like the real world, school or any other group of people. Let this be a lesson to you in psychology(you can learn from anything and everything in life--> observe everything).
The fact that you're 15 years old does not mean you can't think, have emotions, or can not teach someone something. You are going to be a woman soon, and the time will come faster than you know it.
You must understand that on this forum, you're speaking to older adults. You may want to talk more in the teen chat.
Remember to never stop strengthening your body and your mind, and never stop fighting for your life. We need you to get through this somehow, because you could be a future surgeon who saves someone else's life. Get better from this, and you can accomplish anything you want. You're the future.
It's not going to be easy. Just keep at it. I'm not going to 'sugarcoat' it. You have a very difficult situation.
-------------------- Never walk through a cornfield backwards.
posted
You know, I hate when people fight. You guys are acting like 5 year olds. Saying stuff back and forth and I am caught in the middle.
I really appreciate the defense. lymewreck really knows. That was a great post.
I am trying to be more positive so I am not going to think about the negative posts here. I just here to have someone to talk to and help answer my questions.
I am sure many of you had to be like me when you first came here.
About those questions, I did order the brochures and show my parents. I talked with my mom about it more last night until she finally made me cry and I left. I told her what 'I' wanted done. She basically rejected and refuses to just throw it all out there. My parents are going in a different direction than I am.
Ok, I am trying here. You guys keep accusing me and thinking bad things about me. I am a good person and I am doing my best. Obviously my best is not enough, but I am trying to make it better.
I couldn't get up the nerve to talk to a teacher or anything, but I have explained everything to my best friend. She seems to be the only one who can understand me here in person. Everyday she asks how I feel and everything. So, today I sat her down and told her everything. I spilled it all out on her shoes. And guess what, she is 15. I know she can't do anything, but she is there for me.
And being the age I am, she can understand how hard it is.
Now, I don't want you guys to fight about this. It is not what this place is for. We are here to help each other. Give advice, help, support, ideas, and everything, not fight about stupid stuff. Its like listening to my parents fight about dumb stuff like the water purifier and stuff. It is pointless and disappointing.
How is all of this helping me? You guys are accusing and getting mad at me and each other. We are supposed to work together. And I am sorry if I can't be everything you want me to be, but I can't. I am trying.
You guys need to pull it together and stop all of this crap.
I am sorry about talking about my day, but I was HOPING someone could shed some light on why these things are happening to me during the day. And whether or not it is 'normal' or whatever.
I tried the garlic and it made me sick when I bit into it so I have only taken a few bites since then. It makes me feel really sick.
I think lymewreck said they would write a letter to my parents. I could do that. I would give it to them and see what they say.
See there, that IS something a 15 yr. old can do. I plan on driving myself everywhere when I do turn 16 so I promise then I will be able to do more.
Like one person who was talking about there parents, my parents aren't talkers. I don't talk to my parents a lot. I never really have. I have been to myself sort of. I get scared talking to adults of any kind. That's why I like to talk on here. I don't have anyone else. I feel comfortable on here because I don't have to say it directly to you.
Also, my parents don't abuse me. But, I thought it was a good example.
And the writing thing would be ok, but I don't like to read so I am not sure if I could be a writer! But, thanks for saying that. Maybe one day I will write a book. It would be really fun. And I would like to tell me story from a teens perspective.
And, yes, I can afford the test. It would be tight, but I could do it. I told my parents it was best. I told them to get me tested and they said ok. But then I said through Igenex. And they didn't respond. I told them it was the best place to get it done. But, I don't think they like the price.
I think I am getting tested Wednesday. My mom said she was GOING to talk to the doctor about it then because she believes I have Lyme. So...
Ok, I can't remember everything else so I will have to go back and read it again.
But, for now, I have A MEDICAL QUESTION(!!!), today I experienced this weird thing. I was fine talking to some friends when all of a sudden I got this really sick feeling in my stomach. I got a headache and then I got really red in my face.
I started getting really hot. Usually I am cold sensitive and I wear a fleece jacket year round! But, I started burning up. I took my jacket off and I was so hot. Heat was just radiating off me. I got really tired and had a bad sick feeling. I had to lay my head down and try to relax and sleep.
I figured if I slept it would go away. I woke up and I was still the same. Hot, red, sick, headache, and really tired. Everytime I tried to get up I felt really sick. I had to leave for lunch and it was not as bad, but lasted around an hour.
After lunch, I was still hot and felt bad. I had eaten just just before this all happened so it wasn't that.
Finally, my face started to lighten up. And I started feeling better. Now it is about 5 hours later and I feel much better. I am not hot anymore but I still have a little headache (probably from really all the hatred comments on here). After the hottest stop I was cold again.
What was this? Has it happened to any of you?
It kind of scared me. I didn't know what was happening. Or why I felt like that.
Well, I can see I shouldn't write long comments, so, I will go back and read again so I can answer the stuff I missed.
But, for those who are arguing against me, find something better to do. There are sick people on here who want help and support. So go help and support them. As for those who commented in my defense, thanks, you guys are the ONLY reason I haven't left this place yet.
I mean, it is the ONLY support and help I am getting so...I don't have a choice, besides I like it here. Most of you are very helpful. But, some, like my doctors, are irritated that they can't help me and I am not doing anything.
Not my fault and I do feel guilty, but I can't do anything about it. I wish I could help myself, but I can't, some people just need to understand that. I tried talking to my parents and it didn't help nothing but my self-confidence, it helped it go DOWN.
Well, I just want to say thanks, and that even though I should be discouraged by this I am NOT giving up and I am NOT letting this get to me. I can't if I want to get through.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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quote:Originally posted by TNJanet: OK, once more I'll try again..........
Something isn't right here. SO MANY people have offered help in myriad ways and as far as I can tell, none of the advice has been acted upon.
We are either being snoockered, or this "15 year old girl" needs serious counseling. Either way, I think all the efforts of caring folks here have not changed a thing for Christi. Until she takes charge of her situation and takes up the offers of help, nothing WILL change.
Christi, have you mentioned to either of your parents that there are adults on LymeNet ready and willing to speak or write to them? I have seen nothing here that suggests you have. If not, why? You have used excuse after excuse as to why you can't talk to your parents. Why not print out this thread and leave it on your kitchen table or somewhere they would read it.
I told myself I would not respond to this thread again. I am a compassionate person and try to be positive but no matter what a person's age is, ultimately if change is to occur, they have to make the moves towards change.
And Christi, if you are as sick as you have reported here, you can forget going to school this summer, riding your bike, participating in any activities, including working with your father. Lyme disease is serious. Left untreated, it can ruin your life and is not something to just complain about.
I wish you well, Janet
Your right, something isn't right here. And it isn't me. What's not right is you getting anry with me about something I can't control. You are NOT be 'snookered' or whatever it was you called it and there is not need to put '15 year old girl' in parentheses. And I DON'T need SERIOUS COUNSELING. Thanks. I think you need to keep to yourself.
I appreciate opinions, but with the people here who ARE trying to help, that takes up SPACE as someone mentioned. You know, adults always say IF YOU DON'T HAVE ANYTHING NICE TO SAY, DON'T SAY ANYTHING AT ALL. Well, have you ever heard that?
Because you said somehting that weren't nice. And it is a waste of MY time just reading it and soaking it in. So, thanks for your opinions, but I would rather not have them if they are going to be like that.
The efforts of the CARING PEOPLE (whether or not you are one) have changed a lot for me here. I know so much more than I did. I get support here and "most" people here understand me. They know what I am going through and they make me realize I am not alone.
They have helped me through countless nights when I feel so far down away from everyone else. They have shared there experiences and gave me advice. I did use what I could. I can't take myself to the doctor, so NO I didn't do that, but I ordered all the brochures, I talked to my parents, my best friend, and I tried the garlic.
I talked my parents into realizing it's not just one thing but much more than that. I met some amazing people here and admire them for what they do. So, the OFFERES of people here HAVE CHANGED ME. They have changed a lot. You have no idea what it was like for me before. I know what to expect all the time. I know so much more now. And I know what to do about it. So...keep thinking whatever you want, but you are wasting your time.
AND YES, as a matter of fact I DID tell my parents about everyting on here. How you guys have offered to speak with them. How one person offered to set up and appt. and MEET me there and help me. Everything. You need to look more closely because I have suggested that before.
And I am NOT making excuses. I am telling it how it is. Ok, we are all different. Families are different. People are different. How can you judge me and my family when you don't know me?
My parents and I don't talk a lot. We don't have that close relationship like most. I don't feel comfortable talking with adults because some turn out opinionated and judgemental like you are being. They don't make me feel like I can talk to them about everything. I am sure most teens will say the same thing. We don't feel like we can talk to our parents.
Sorry. I tried. And I was turned down.
And I disagree, AGE MATTERS. If you were talking to a 5 yr. old would you expect them to change everything? NO. I am making moves, but I don't control them, my parents do, so go jump on there case not mine.
Sick or not, I am going to school this summer. I will ride my bike and I will participate in activities. I am determined and I am trying to make the best out of it. I realize Lyme is serious. Obviously I know that or I wouldn't be on here.
It can ruin lives, but I am being positive and it won't ruin mine. Have you ever heard mind over body or something like that? IT means that you can do stuff but in the end your mind always wins. So, you can think it is going to take your life an dbe negative, and it probably will.
Positive people work toward self-actualization and they tend to live longer. Why? Because they are positive. They look at everything as a gift. Like it happens for a reason. And they take it and turn it into good.
So, that is what I am doing. I won't let it take me and I will fight. I am doing EVERYTHING I can now, why can't you appreciate that.
Well, I am not mad, but I felt like I should speak up for myself. And give my opinion on something.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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I am very glad you will be listening to Christi's sharings of her situation. If you have read all of her posts, they have gone on for well over a month and she has not acted upon any of the VERY well-meaning and good advice she has been given.
After you have been here a bit longer, you may understand why many of us are skeptical. We can only offer help so much and then the rest is up to the one who is asking for help. I haven't noticed Christi actually asking for help, but just venting.
The medical thread is not for venting about one's day and all the things that were wrong with it. If everyone here posted facts about their days here on the medical thread, the moderators would probably have to start a new thread....something like "All the problems Lyme caused me today" and it would overload the system.
We are here to support each other, exchange information regarding Lyme treatment and where to get it, post new treatment protocols, etc. Yes, we are here to listen, especially to people having a meltdown or just having a very difficult time.
You can go back through older threads here and I doubt you will find another one that goes on and on like this one has. However, if you really want to listen to Christi, why not PM her and offer to do just that. Then she can share with you all her problems and excuses why she can't get help or talk to her parents. That way, the general population here won't get sucked in to this ongoing diatribe.
Glad you are here, Janet
This post has not lasted a month. And obviously you don't pay so much attention because I usually have a medical question about my 'day'. What is there to be sketical of?
I didn't mean for this to go one and on. I just have QUESTIONS. If I post them seperately, I lose them. I can't keep up with them. So, I post my questions on the same one. Today I have had more comments than ever. But it had nothing to do with helping me.
You have put comments before that were no help to me. And they usually start something or are a part of something. Fighting, arguing, accusing, and all that is stupid. And it does not HELP!!! Hello!! You want me to use the help, GIVE ME SOME!! Everyone else has, but you seem to get upset about it.
You talk about support and all that, but when have you supported me?
Every comment of yours to me it the same. 'Move your post. Use the help. Fraud. I don't care how old you are.'
Everything. That is no HELP! If you are going to post, post something helpful. I believe some of your advice was to give support and stuff. So, take your own advice.
"Then she can share with you all her problems and excuses why she can't get help or talk to her parents." This part I really don't like. Share my problems? And excuses? I don't make excuses. I just tell why. They are real ok. If I were that type of person who could trust you, I would invite you over to see for yourself. You don't know me, ok? Don't judge and don't say crap like that.
"That way, the general population here won't get sucked in to this ongoing diatribe." The 'general poppulation' gets sucked in when you make remarks like the ones you did. That's what starts crap. You know, for a person from my neighboring state, you sure aren't like the people around here. I know a bunch of people from TN and they aren't like this.
Although, I do understand what you are saying, there is a nice way to say stuff. You don't have to go be all judgemental and mean about it. Goh. As if I weren't depressed enough. Although, I did get something out of it, I controled my temper!!!! I usually can't, but this time I did!! I thought positive and tried to be nice and explain what I thought! I am proud of myself!
But, thanks for the comments, next time try not to make them so cruel and negative. For my sake and everyone elses. Thank you.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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quote:Originally posted by lymewreck36: For TNJanet and others who are "skeptical," I have been following Christi's posts since the beginning. Christi has approached her parents on several occasions about lyme disease, only to be discredited and rejected for her opinion. Her parents are following other leads, and when Christi feels like she can't take anymore, she often feels pushed away by them.
I lived this as a young person undiagnosed with lyme. It is exactly the same feeling as living in a cage.
An under-age child is powerless under her parents to direct her own medical care.
How many of us have lost friends and even spouses that wouldn't believe us. How many of us have lost insurance, jobs, hobbies, passions.
And then how can those of you who suffer with this expect a 15 year old girl to get this situation under control with out her parents help.
Christi has asked for help with herbal remedies because she can act on that without having to fight her parents or other adults. Example....eating garlic.
Example two, I suggested she order the three free lyme borchures on lyme disease, getting several copies. I sent her the weblink to order. She ordered them and sat down and shared them with her parents.
Example three, one of her most recent posts in this thread describes her having a converstation with her parents on the subject of her illness, trying to convince them it is more than her parents realize. She describes the difficulty she has with communication very well. She should be a writer.
She is so genuine it is hard to believe someone might think she is not. She tried to paint the big picture for her parents, the clustering of symptoms, so they would stop looking at just one body system and seek an answer to the entire thing.
From time to time, it does appear that her post would be more appropriate in "general," but many times her long posts begin with a medical question, and then there are so many responses it just gets a life of its own and becomes very long.
I once read a VERY long post in medical questions that included jokes, lyrics, personal stories, and an entire host of other material as the thread grew.
Nevertheless, Christi should post daily reports in General when possible.
The point, however, is that if you don't understand Christi's "lack of action," then you were not sick as a young person, you had unusually understanding parents who think outside the box, and/or you do not have teenage daughters of your own.
I realize I am opening myself up to attack by making this defense, but it has to be done.
Things Christi needs to respond to.
1. Have you shared the information about the lyme doctor in lower Alabama with your parents. Do not, at this point in time, include the discussion of him possibly stopping treatment. Just get there and get the testing done.
2. Do you want me to fashion a letter to your parents.
3. Have you confided in a school nurse or counselor and asked for a go between with your parents to push the idea of appropriate lyme testing.
These questions have been asked, and as far as I can see, they have not been answered. Whatever is holding you back from addressing the three above issues, please post an explanation so people will stop accusing you of not taking care of them.
I can collect some links that explain why lyme testing is inaccurate for you to present to your parents. This will help explain to them that just any old lyme test where you live is not going to be good enough.
Have a good day Christi,
mary
THANK YOU!! NOW HERE'S A PERSON WHO UNDERSTANDS!! that was a GREAT post! I agree with everything and it explains well. Thank you so much!
3 Things I Need To Respond To:
-Yes, I have discussed the LLMD with my parents. I didn't say he would stop treatment after so long. I told them it was the best thing I could do and everyone on here had told me to do it and I trusted they knew what they were talking about.
-Yes, I would very much appreciate if you wrote a letter. I would be very grateful. I will be sure to let them read it. Thanks.
-No, to the nurse or adult, but I have told my parents about the better ways to go about getting tested and diagnosed. Basically, I tell them everything you guys tell me. That way they will know and, hopefully, be convinced. I am not sure why they aren't saying abything. But, they are getting me tested and are just waiting to talk to my new doctors!
I just got 3 new ones so hopefully they can be more helpful than the others. We are going to talk to them about Lyme. A woman at my church yesterday was talking with my mom about it and agreed. She also said I could have Fibromyalgia! She said she has it, but she is also in her early 70's! But, I appreciate her saying so.
So, I am on a new path and I am getting somewhere now. It just takes some time. I am going to them doctor the day after tomorrow, Wednesday. I will be sure to take good notes and tell you guys everything he says. And what we are going to do next.
I just want to deal with my hert right now. So...
"The point, however, is that if you don't understand Christi's "lack of action," then you were not sick as a young person, you had unusually understanding parents who think outside the box, and/or you do not have teenage daughters of your own." I am sorry for making this longer, but I LOVE THIS PART!!! It is so true. Thanks.
Well, I think that is everything. I just want to straighten things out. I don't want people hating me or nothing. And I don't want people anry at each other. I am trying to smooth things out. I am some-what of a perfectionist and I hate for things to be out of order like this is. So....PLEASE...find the desency to stop accusing and all the other stuff and get back to the real issue here.
I would greatly appreciate it. Thanks.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
O.K. Christi. I have seen changes in you since your fist posts a few weeks ago. You have taken much of my advice to heart as far as interacting with people, ordering material, dealing with your sister, handling your mom.
Let me say that when I was fifteen and moody as hell, sick, constantly depressed and plagued by nightmares and body aches, headaches, tenderness, etc., I would approach my parents time and time again to try to tell them what I needed.
I am now 42 years old and have my children, but I see myself walking up to my parents, crying, in my minds eye, as clear as a bell.
I remember my mother's face as she turned and glared at me and asked, "what now Mary." They were sick of me crying, sick of me not being well, sick of my unhappiness....
One horrible day in my youth I spent the night at my best friend's house after something horrible happened to me. I couldn't tell my parents.
I came home, with this private pain which I hold to this day, and my father came into the family room with his chubby finger in my face, and told me my mother was crying because of me and what a snot I was.
I see myself standing there in the family room, in my minds eye. To them, I was causing the family financial trouble because I wanted to go away to college and get out of that place.
They will never know what that moment really was for me. It is best that way.
I see in Christi this effort to be known and heard, and the difficulty. I know that kind of struggle.
I used to be a crisis line volunteer. I had to have extensive training to do it. Before I became a teacher, I needed my altruistic needs met, and that did it for me . I learned that all kinds of people are in crisis, and they all have different coping skills.
The way to help someone is to quickly find that person's own way to cope. For example, if someone called me wanting to commit suicide and was not a believer in God, they'd probably shoot him or her self if I said, "Let me pray with you."
The point is, just because someone does not respond to a situation the way you would does not mean the person is fabricated. That is the point.
I cannot see someone suffer and just turn the page. That's just me. Hate me for it if you wish. If that makes me a fool, than I am in happy company. Wouldn't change that about me for the world.
O.K. Christ. What do you need me to private message you.....I think something about testing accuracy would be appropriate since your mom is talking about testing you, probably where you live, and is not happy about the cost of IGENEX. That would be the next move for you, to understand some things about test kits.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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You joined Saturday?! How could you have been following this saga?
Fellow Lymenet users. Don't you realize that all this space wasted by a blog on the medical board causes useful information to be dumped for space?
I don't want to lose those precious experiences.
Move this to another thread, or private message this person.
So what if they joined Saturday? Goh, you really have a thing about finding the flaws in people. I am sure they didn't join Saturday to be critisized by you. (BTW, Welcome to Lymenet! Trust me, once you get past this stuff, it is a great place! Very helpful, a lot of good advice, and a bunch of people willing to help with your every need!)
Fellow Lymenet users. Don't you realize less space would be used if people like kelmo and tnjanet would stop accusing people and starting stuff that causes a war of words.
Ever since the first time you said something about moving my threads to 'general' I have noticed more and more stuff in medical that SHOULD NOT BELONG THERE!!! Mine is medical. But, there's are still on here as well. So...I post in general when it is not medical. But, this is medical. So... I am sorry you feel this way.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Wow. That moved me. That is similar to my story. With the parents and all. Thanks for sharing that. At least I am not alone in this.
Thanks so much for sticking up for me. And being there. It means so much. Thank you.
I know I have changed. I don't know. It just seems like everything is getting worse all the time and I am changing. But, I try not to. It is just something I can't control, but try very hard to.
I would love for you to do a letter. Testing would be great and stuff, maybe something about the scost, but make sure not to push so much and mention that it is worth it and stuff. That's what I try to say.
Like, it is the best thing to do in my case right now. I can get one of my doctors to sicn off for it. No big deal. But, let it say how important it is. That even though it doesn't mean a lot, but it can still help. Like, if it is positive then I will feel better maybe just for knowing. But, if not, it doesn't mean anything.
You are a mom, right? If your child came to you with the same thing, what could they say to you that would convince you make you feel like you can understand it and stuff? Just write about that! Anything. Whatever you think is important. You can PM it to me and I will print it out and give it to them.
I can do that. I am trying to find someone I can talk to. Like an adult. I know everything I am going to say already I just don't know who I should talk to. My counselor, favorite teacher, family member, I just don't know.
Actually, this may sound stupid, but they probably woulnd't expect it from me. Because I seem so 'normal'. I try to hind it so much. So, no one really know the 'real' me. But you guys and my best friend. So...I guess that is why it is so hard.
But, anyways, I think I have said enough for now. Thank you so much for doing this. It means a lot. Thank you.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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As I wrote on another thread, (that just got deleted ), in the last 6 months or so there have been many of these 'new' members show up and jerk everyone around.
"Jerk" is the operative word here.
At least they don't use foul language, like at sci.med.
I have to be honest and say I don't understand. I am not jerking anyone. I didn't even know about this place until a member from here told me about it and invited me. She said I could find help so...now I am here.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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), in the last 6 months or so there have been many of these 'new' members show up and jerk everyone around.
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