posted
Wow, I just read the bio for TNJanet, it said former psychotherapist??? Hmmm....interesting. That's cool to me, but weird in another sense.
-------------------- 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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How come when I put in the # for TNJanet and typed in a search the third thing to come up says, " Good News for Wilsongal *Christi* "
What does that mean? How come it says the thread I am trying to reach is nonexisting?
I want to know what it was. Obviously it was about me, but why is it there and nonexisting anymore?
Anyone care to comment?
Much appreciated!
-------------------- 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. I had to drive my two older daughters to dance class.
And I remembered something else to say to "Janet." I'm sure Janet is a nice person who just hasn't had the life experiences I have had, so we are going to see this differently.
But I will tell you that when I lived in CT, TICK CENTRAL, there were plently of Girl Scout Leaders (myself one of them), Landscapers, teen age soccer players, etc. that had lyme pretty bad and were trying to continue their lives and activities.
My three girls have lyme and have to have their medication, tire easily, oldest has asthma, etc., but the oldest played varsity soccer one season and the next season did cross country.
Yes, she was the last runner to come in every time, and yes, she ate dirt often when she fell, but she refused to give up that thing she identified with.
The most horrible experience I had with a LLMD here in lower Alabama is when he asked what my daughter's grades are, and when I reported she made straight A's, he said we needed to stop treating her because she was not sick. This because she made good grades.
Now, most of us know that lyme manifests differently in different people. Some are more neurological, like my middle daughter with cognitive and memory deficits, and some are more arthritic, like my oldest and youngest, and some are unfortunate enough to have been bitten multiple times and have it all, like myself.
Yet, I run my home, with tremendous struggle and internal warfare. We plan our summer vacations. All of this does not mean we are not sick. That would be pretty simple minded to think so. I see people at the hospital swimming pool with MS, but get to water aerobics.
My oldest daughter is attending a medical forum this summer for high school students interested in Medicine. She will be in Boston to meet with hospital staff and doctors. And she has lyme. Should she stay home from all summer activities because she has to carry around several medication bottles and inhalers?
She will never be surgeon because of the lyme arthritis in her poor hands, but on with life if at all possible.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Christi, I will try to send links to you regarding testing accuracy since she might try to test you this week, i think you said.
Give me a week to compose a letter. My husband is in India for business right now and I'm barely managing the house and kids on my own, so it will be pieces of time here and there to get a letter together.
I never just write something quickly. It has to be crafted you know. :-)
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I'm so sorry. One more thing.
Let it be known that teen age girls are strange, moody creatures, hard to understand and get through to......when they are normal healthy subjects!
Add illness to that, and wow! good luck.
Mary :-)
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
Wow, I wish my mom could do all that. You sound really busy and like you have your hands full. No wonder you understand so well! Thanks.
I am the same way until now. I make straight A's. But, this time I had an...85...in Algebra 2. I kicked myself so hard and cried. That has never happened to me. I was so upset with myself.
I am working very hard right now to make it better. To not let it get to me. It upsets me because it will be on my transcript and stuff and I have only made 3 B's in the past 3 or 4 years.
I admire how you can hold down your family and you guys are all sick. That takes effort and I admire it.
I wanted to apply for that same medical thing, but it costs a lot to go. I was invited to 5 Leadership Conferences that dealt with medical stuff. I could have gotten my school to pay for it because it makes them look good because not a lot of people get invited, but I was worried about getting sick and not being able to come home.
I didn't want to worry myself and get sick and everything. But, I would have loved to go to the hospital and meet the doctors. That would be the GREATEST thing ever for me!! It would be such a great opportunity. Maybe next year.
I mentioned applying for the East TN State University Med Camp...and I didn't get in. Only 20 people get in and only 5 are from surrounding states, but I will try again next year.
I agree with the continuing to do activities part.
Well, 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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quote:Originally posted by lymewreck36: Christi, I will try to send links to you regarding testing accuracy since she might try to test you this week, i think you said.
Give me a week to compose a letter. My husband is in India for business right now and I'm barely managing the house and kids on my own, so it will be pieces of time here and there to get a letter together.
I never just write something quickly. It has to be crafted you know. :-)
Mary
Ok, thanks. Take as long as you need. I am just glad you are willing to do it in the first place! Thanks. Wow! India? I have always wanted to go there!
I want adopt kids from there! Well, anyways, thank you so much. And take your time. I am a perfection myself and I am way to hard on myself, but I like things to be perfect, so I understand.
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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quote:Originally posted by lymewreck36: I'm so sorry. One more thing.
Let it be known that teen age girls are strange, moody creatures, hard to understand and get through to......when they are normal healthy subjects!
Add illness to that, and wow! good luck.
Mary :-)
That's so true! I like that! Don't be sorry. If you forget just add it on. That's ok. I would rather you tell me than not tell me! I love that comment though! 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
Christi, your situation is so sad. I know things feel crazy when you are sick and have little control.
It can be like you are going in circles, trying to get help. . .getting your hope up, then getting blocked from doing anything and getting blamed.
I think you put yourself down and blame yourself for things that are beyond your control. It is not your fault. . .you are not to blame. You are not crazy. Lyme disease can cause mood changes, extreme frustration, confusion, etc. Most of us here understand that.
A key is getting through emotionally to your parents. It is okay to express your feelings to those you care about. Emotions to focus on could include mad, sad, scared, hurt, or "I need. . .".
It helps to have eye contact with the person to whom you are talking. Use sentences that start with "I" ("I feel. . .").
It helps to have physical contact (like a hug or embrace) with the other family member. Even holding hands could help. You have to get your real emotions through while taking responsibility for your own behavior.
The bottom line is that you need your parents for emotional support, to protect you, and to help meet your needs. You can't do the treatment thing by yourself.
posted
i hate this turned out like this but sometimes it needs to happen because how else do we grow in character!!!!!!!!!!
lymetoo and janet, etc. I will keep my mouth shut about being called a "jerk". I did just start on the forum saturday but i am smart enough to do my research and use my heart and my experience.... You don't know my life or me by reading about me since saturday so please i ask you to not judge me like that! If you knew me you would know that I am a very kind and compassionate and a great wife and mom of three beautiful little girls. I can go on about my life and my experiences but it would take up this forum....
Christi, I am dx. with ms and now bedbound because of my heart and now i'm thinking i may have been misdx. and i may have lymes... And i want to say that because of my search for what may be wrong with me I found this place and learned way more then i thought i would mostly by hearing others story. Just saturday we went fishing and yes a powerchair can get me to the fishing hole (ha ha) my daughter was bit by a tick and now she may have rocky mountain spotted fever and the doc. said to rush her to hosp. by ambulance if she doesn't get any better by tonight. she was started on antibiotics and blood work done and the doc. said this is going to be a long hard road to see if she has it and if the meds. will work...........
MY POINT IS..... God led me here on Saturday to become part of this forum I thought it was for my illness but instead it was to be educated on this disease and now I knew what to do to help my daughter......... WHAT A BLESSING!!! and unfortuntly i was attacked for being that new and being able to comment on your post.... but i am a big girl and i can handle it. i just want you to know i think you are a very strong and mature person and you will do great in all you decide to do. and i would love to one day read your story if you decide to write it!!!
huge hugs from the ones who care!!!
love lisa
Posts: 40 | From ky | Registered: Apr 2007
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I feel that way. I am working on emotional stuff. I am not really 'close' to anyone now. I don't really have a person I talk to about everything. I used to tell me grandma everything, but she died 2 years ago May 20.
So, it has been hard because I NEVER told anyone else stuff. I am not big on hugging or any of that. Like I said I am not close, open, and I guess I am weird.
I do blame myself sometimes, but I don't really blame anyone for what I am going through. Sometimes when I go through one of those 'moods' I feel like I am being punished and I blame myself, but I know for real that it is just life. And I just have to keep going no matter what.
Nothing can get me down and I just have to believe in that. I know someday I will have my answer and I will be able to share it with others and I can go back and tell everyone. Once I know for sure I am ok if I tell the world out loud.
It's just I don't have an answer to tell people. If I have Lyme and I am dx with Lyme. I will not be ashamed to say "Hey, I have Lyme Disease". It won't matter. I won't care to tell anyone what I have, but when I have nothing to tell them it is a different story.
I was wondering if anyone had any answer for what and why I experienced that 'hot sickness thing'.
Well, thanks so much. This means a lot to me, really. You guys have no idea how just 3 months on here HAS changed me for the better. Whether you think I have changed or not, I really have. I HAVE gotten worse, but I know more now and everything. I have more support and more people who care than ever!
They should have some kind of award for this! Like 'greatest people' or 'most helpful' or something! Well, I appreciate everything and I need to get to bed. School. And I am already worrying about the doctor on Wednesday. But, I am taking deep breaths and trying to think positive and not be scared or have anxiety that makes me sick.
So, thanks for everything. 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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quote:Originally posted by lisabeth: lymetoo and janet, etc. I will keep my mouth shut about being called a "jerk". I did just start on the forum saturday but i am smart enough to do my research and use my heart and my experience.... You don't know my life or me by reading about me since saturday so please i ask you to not judge me like that! If you knew me you would know that I am a very kind and compassionate and a great wife and mom of three beautiful little girls. I can go on about my life and my experiences but it would take up this forum....
huge hugs from the ones who care!!!
love lisa
Amen to that!
-------------------- 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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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Wilsongal22.
Here is an idea. I like how you asked a brief question in medical regarding blood tests. That's really what this forum is for.
You could do what others have done. Some have blogs and put a link in their signature line
That would be a good place for you to vent, and it wouldn't take up space on the medical board.
Does that sound workable? I think our moderators would appreciate it, as well.
Posts: 2903 | From AZ | Registered: Feb 2006
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quote:Originally posted by lisabeth: lymetoo and janet, etc. I will keep my mouth shut about being called a "jerk".
Show me where I called you or anyone else a jerk.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I agree with Kelmo,
You are going on and on and on.
It is very irritating, because nothing is really being said. I know that lyme makes us crazy and sick and nuts, but sometimes
we have to be told we are acting crazy, being nuts, being a pain in the *_)(_)(, to
realize. I have been told this, and it hurts a little, but I know that it had to be done. I am trying to do this nicely.
If we are made aware of when this happens with each of us, we can then become aware to not do these things again, it may take some
time, but eventually our brains can register.
So, all said in good things.
I am not meaning to hurt you Christi, just make you aware that this is going on too much, too long, sometimes we just go on and on, but then we realize this and move on, this is not happening, here. This is my view, not meant to be mean, just honest. So, be well, and get well.
Trish
[ 01. May 2007, 01:09 AM: Message edited by: Health ]
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
Wow. I truly can't believe how nasty people can get. It makes me sad. And it's nastiness beneath a thin veil of "trying to help".
Why the nitpicking about where in the forum this discussion has developed? I've seen oodles of topics posted in the medical forum that are patently not medical.
If you read back to the first post, Christi began by asking if there were any remedies she could look into on her own in the meantime. Is that not medically related? But her question still was not answered. And in effect, she received snipey responses.
Did it occur to anyone that she is a minor whose hands are a bit tied at the moment? That there is a lot of frustration that goes along with that predicament? That perhaps she doesn't need the added pressure of people barking at her on a site that is supposed to be helpful for her?
Did it occur to anyone that maybe she just needs someone to talk to? Or greater than a number of one person to listen to her? Maybe she just plain needs to talk instead of being jumped on for not getting testing done quickly enough? If those of you who are complaining don't want to deal with it, then don't read the posts...instead of launching an attack.
However suspicious you are, distrusting you are, angry you are, sarcastic you are...it doesn't look pretty. There's already enough ugliness in the world. Why promote more of it? How about "love thy neighbor"? Isn't that how it's supposed to go? Not "love whoever I want and beat down anyone else who does not agree with my way of thinking"?
I just couldn't let this pass without saying something. Because it makes me feel embarrassed to associate with a community where there is so much ugliness abound. It happens all the time. And it makes me wonder what the heck is going on here, and certainly undermines the professionalism required to present this illness to those who are new and looking for answers.
Christi. It's cool. And I think you are pretty brave to tolerate the bashing. And I for one don't mind lending an ear.
Oh. Let me add this edit to the post. The sick flushed feeling you were experiencing: I've had the same thing happen and never found out what caused it. I do know if you have a potential heart stuff, it can cause symptoms like that. I have mitral valve prolapse and although not serious, it can give me some real pain in the butt symptoms, i.e. flushing, rapid heart rate, feeling faint, feeling feverish. So when you go to the cardio, maybe they will be able to associate what you experienced with a heart issue.
I've also noticed that when I have not known what is going on with me and I'm feeling ill, I tend to be hypersensitive to everything my body does. It's normal, and many things will just plain not have an explanation. But when I'm generally feeling better, the weird daily quirks I experience are much easier to tolerate. Hope this helps.
And you are a great writer. I think the idea about starting a blog is a fantastic one!
[ 01. May 2007, 01:06 AM: Message edited by: fancykat ]
Posts: 38 | From behind the definitions | Registered: Sep 2005
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posted
Just sticking my 2 cents in for a minute, Christie's posts started almost 2 months ago (in several others posts) but they are still the same problems and seem to be getting worse. It's so frustrating to read about them when we know there is help available and it has been offered to Christie but in Christie's situation it just hasn't been possible for her to accept it at this time.
I e-mailed the moderate to ask if there is some place appropriate to write about our personal stories or even a diary...I don't know about the links in signature stuff...
Anyway Christie, I found two links today that you might be very interested in if you haven't already read about them.
The first is a Lyme chat-room for teens, the 2nd is a story very similar to yours, she's 13.
Hope you find this helpful
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Christi,
You read and respond, but I am not sure you really understand.
Yes you have symptoms that can be Lyme.
Every symptom you bring up could possibly be attributed to Lyme and/or co-infections.
It was "tight" for me to have my kids tested as well as my mother via Igenex.
However, I do realize that this may be one of the single most important things I can do for them.
When you turn 16 life does expand if you get that driver's license.
However, I have been unable to drive at times due to Lyme and/or-coinfections.
It is not like this magical number thing where everything changes now that you are 16.
Same goes for age 18 and 21.
We all have confinements that we must work from.
Whether it be family, lack of funds, inability to get to a LLMD, etc.
Part of getting older should be also getting a little wiser.
I do care about what happens to you......
I hope that this experience helps you to grow emotionally as well as personally.
We have all had negative posts on this board.
Sometimes criticism is not always constructive.
So........
I am not criticizing you or your situation, however, I would suggest
that you spend less time responding to posts deemed "critical" by you and focus on
What it is you really need.
The only person(s) you need to satisfy are yourself and in this case, your parents...
I also wonder where your faith in all of this?
Sometimes we face situations that make us grow up faster than we should.
I believe this is one of these situations.
Take the good advice and the negative comments and understand that most
Adults here do understand your symptoms, however,
Are continually frustrated by the on-going saga without an end (or beginning if you do get dx with Lyme).
You did come to the right place for help....
I think you need to get a little aggressive about helping yourself too.
So what if the Igenex test is a little expensive...
If it is your money, and you earned it then you should be able to spend it on something reasonable.
I WISH I had known about Igenex prior to being tested for Lyme....
You do have an opportunity here.
Opportunity to learn.
Opportunity to grow and mature.
Opportunity for support.
Opportunity to get a diagnosis.
I am continuing to pray for you and your parents,
and am hoping/praying your heart testing goes well.
Just a gentle reminder that you need to be part of the solution....not just part of the problem.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
O.K. Christi. This is coming from Mary. Try to keep all "daily posts of diary material" in General. O.K. If you feel the urge to start a post with "today if feel...." or "today I fought with...." or something like that, take it to general.
When a medical question has been addressed, do not respond to any other posts. I will P.M. you if a post in Medical takes a life and ends up general support. And then extend the discussion in general so as to be as pure as possible with limiting Medical to medical questions.
People here do understand the need to keep medical for medical. There are a lot of good reasons for that that you cannot understand at this point.
So let's just make that the new formula from this point on. It needs to be done asap.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
Christi, I found out not long ago that i am orthostatic intolerant. which means my heart rate is normal laying down flat and when i go to the standing position my heart rate goes sky high and my body goes into a fit. but if i am sitting in my wheelchair too long with my legs down my heart starts to rise and my body feels this flush feeling like you were describing earlier. so what i am saying is there could be a connection there with the heart for you...my suggestion would be to get a wrist bp and heart monitor to keep an eye on your heart rate to see if it changes when you feel that way... also i was wondering if you have a myspace profile??? i am going to give you my profile address and you can go to it and see my page where i can express who i am and i have great slide shows of my family and i also just put a video on it about the struggle with lyme disease to hope for more awareness!!!
posted
Ok, thanks. I do agree medical should be in medical and general in general. But, I think I go on about my day because it has medical situations in it I have questions about. I just forget to put the question part.
I will try to seperate the two from now on. I just get confused and lost when I have more than one post going at a time. Like the blood test one from this one and all of it is confusing to me.
That was a great post by fancycat.(think I got that right.) I DO understand, ok. And thanks for whoever answered the question about MY DAY AND THE WEIRD HOT FEELING I experienced.
So, still could be associated with Lyme? It could be a symptom of a heart problem, right?
For those who care, my doctor called today and I have to go tomorrow(very scary) and they want me to go Huntsville(2 hours away) just for my Echo. We told them NO! We want it done here. And they want to send me to Vanderbilt(3-4 hrs) just to see a Ped. Rheumy. Can you believe that! We said NO again!
I think word got out about me being a hard case and they are trying to kick me out of Florence! lol
I am very scared about tomorrow. The doctor tomorrow is supposed to send me to the others. The only reason I am GOING to see him is so my mom can get me tested for Lyme. Just to see what happens with the local lab. And so she can push him about me having Lyme! So, it my be good. But, I am SO NERVOUS AND SCARED TO DEATH.
Should I get the test results myself and post them here if I can? I mean, whether or not they tell me it is pos. or neg., should I?
Well, thanks so much and I have one other request, those who keep telling me to go to general...I am asking medical questions right now so...I am staying here until I have something general.
And last night I was reading everything on medical that wasn't medical and no one has said anything to them. I think it is just because my post has grown to over 100. Which I can't help. It would be a lot less if people would stop arguing about stuff.
And I know you guys are just trying to be nice about it, and I understand your point. But, I will try to put my "day" story into the medical question I am trying to ask. Thank you! -Scared About Tomorrow-
-------------------- 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
| IP: Logged |
I think! Pretty sure. Let me know if there are any problems with it, because last time people had a hard time getting on it. But, just let me know and I will fix 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
| IP: Logged |
quote:Originally posted by lisabeth: my suggestion would be to get a wrist bp and heart monitor to keep an eye on your heart rate to see if it changes when you feel that way....
How can I do that?
-------------------- 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
| IP: Logged |
posted
i purchased mine at walmart... they have several selections there just try to get a good one.... good luck lisa
Posts: 40 | From ky | Registered: Apr 2007
| IP: Logged |
posted
I am closing this topic. There have been suggestions to which wilsongal22 has agreed to.
If she has a medical question, she will post it in Medical. Anything dealing with support will go in General Support.
This applies to every one else, as well.
If you see non-medical posts in the Medical forum, I encourage you to bring them to my attention in an email with the topic's web address. I prefer email over PMs.
Please feel free to contact me anytime! Good luck and best wishes to all!
-------------------- Jenifer Stolow LymeNet.Org Webmaster Posts: 320 | From Upstate New York, USA | Registered: Feb 2001
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The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
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