Sue- I may try that, and see how it works. Especially with the summer coming up, and not having that much to do, or in a sense having more time.
Thanks for the suggestion
Though, i have kept a journal in the past, yet not about this. Thanks again.

Annie- Your telling me things, that you have NO idea about. I never said you gave me no support at any time, and it sucks that your having a bad time, and im sorry, and wish I could do something for you but everyone knows I cant, nor any one else. Im grateful for everything youve contributed to me, and will continue to be. Hope your doing okay.

To all- Im going to sign off this website for a while, try to cool things down. Lately it seems to be only bringing heat to the website So, while im gone, and i might not return, (haha sounds weird) please be safe and listen to your bodies.


Goodnight.

Tyson, All any of us can go by is what you have posted. No, there is no way I can possibly know your situation. But from what you have said, you aren't exactly getting the care you need. The symptoms you have described in the past would concern my internist, I can tell you that.

There's no need to cool off unless YOU need to. You have not done anything wrong. Conflict is not a bad thing; in fact, it happens every single day because we are all different. Some people don't like it and some people thrive on it. I'd rather avoid it and try to be happy and come to an understanding when conflict arises.

Frankly, I'm not doing okay. Not even close. This year has beaten me up in ways I can't even talk about. So, yeah, when you said what you did it really hurt. I've been there even when I haven't felt good cause I thought I might do some good. Now I'm feeling like it doesn't matter. Besides, there are a lot of other people here with great ideas and support.

You do what is good for you. I stand by what I say - your doctors are not holding up their end of the doctor-patient relationship, no matter what your age is.


Annie

Tyson

I do hope you are feeling better today.

Intervention is needed here as it does not seem very fair for you to open a thread asking other members for advice and then getting upset with them for giving you their honest opinion

From what can be gathered by your posting here, it does seem that you are not in proper care, either from your guardians or by your doctors. That is the impression that is given by what you post here, and so it is understandable why members would show concern for you.

This is a support group, not a crisis center. When in crisis, you need to be at the ER or with doctors who are correctly treating you. Members here can offer you support, and share their own experience and knowledge, but they cannot provide you with the help you need in a crisis other than to tell you the sensible thing to do and that is to go to the ER. If your guardians wont take you, call an ambulance. If you feel your doctors are not treating you correctly, insist on a second opinion.

I do hope you will find the care you need, and also maybe reflect on just how much support you have received from others here.

Annie,

I just want to say that there are two completely different categories of things I am trying to learn from other people on this list. The first is medical. But the second is just as important: I want to learn how to be a fine human invalid (sorry if that word, "invalid," is too strong. I know we're all striving to be as independent as possible, but I am still in the "rapid decline" stage of my disease. I don't know where the bottom is going to be. I am trying to be ready for the worst.)

Anyway, you have no idea how formative it is for me to observe the way you, and other kind people here, take care of the rest of us even when you're so sick yourself. It opens my eyes. It sets up an ideal for me to strive for. It gives me hope that even if I get really sick, I can still put myself in service of other people, and live a life that's not completely centered around myself.

Honestly, Annie, you can't imagine how important that is to me. Life-changing, really. I think on some level I have a fear that, if my disease gets bad enough, I won't be me any more, or won't be a "real person" any more, or will be somehow removed from the ordinary community of human beings (I'm not expressing this well). To see from your example that that's not necessarily so means the world to me.

Abby

Abby, thanks for saying all these things. I, too, need this kind of support. I have had MG now for one year and I still haven't learned to deal with it and don't feel complete now or even like I am able to contribute to the community and everything I love.

I have lost my purpose in life and all my goals, I feel like I have almost nothing left. It makes me feel terrible about myself, in fact this past week I have been wallowing in self pity.

People like Annie set a wonderful example, to let me know that we can have MG and still help other people although maybe in different ways that before.

Honestly, your words brought tears to my eyes. Thank you for the reminder. Many people on this site give me hope and inspiration, and Annie is among the top in that list.

Thank you Annie. and thank you Abby, I really needed a little bit of hope right now and you gave it to me..

Tyson,

I have thought about you all night, hoping that you are feeling better...your situation reminds me of what happened to me as a kid, and I can't stop thinking about it. I want to tell you my story.

I was overmedicated for some minor thing when I was about 4, starting with antibiotics. The doctor gave me more and more medication as I got more and worse symptoms. They ("they" meaning all the specialists in the hospital, many doctors in the hospital treated me) removed my tonsils even thought there was nothing wrong with them hoping it would help me get better. I got allergic to everything they tested me for, every food, everything... They tried limiting my diet. They gave me so many shots that my muscles collapsed and I coudn't walk. Finally, they told my parents that I was slowly dying and they didn't understand what was wrong with me. I was taking lots of medications and my mom stopped counting the shots of different drugs I had received after about 200...

My parents (finally!) brought me to a new doctor after almost 2 years of being sick. The new doctor, Dr Wakefield (I will never forget that wonderful doctor)...gave me a checkup, started to look through a huge folder containing my medical records...and I remember his face turning red and he threw the folder and all the papers went everywhere. He was very angry, he made some comment similar to "how could they do this to you?". The conclusion was that all the medication I was taking was making me sick and that I had a yeast infection from over-medication. I stopped taking all those meds and took a short treatment for yeast infection and I was better within one week (With one exception - It took many years for my allergies to fade so that I am now only allergic to a few things.)

So, my point is...I wish someone like Annie had been around to point out that maybe I was taking too many medicines, to go get a second opinion. I am still angry about all these allergies I have now- most likely caused by all those drugs, and my drug sensitivity -again most likely caused by all those drugs.

Tyson, please consider the fact that your symptoms may be from too many medicines. I don't know what kind of doctor would be best to discuss this with, but I feel strongly that you are over-medicated or that the headaches and pains are caused by the Accutane, but I really don't know since I am not a doctor. I only want the best for you and worry about you. I feel like your doctors are missing something. I wanted to share my story so that you can know that doctors make mistakes and sometimes you need a completely new doctor and maybe even a new medical center.

Take care of yourself. We are here to support you when you need it.

Susan

My perceptions of this situation:
1. Tyson is a TEENAGER -- in the most DIFFICULT time in life -- emotionally, socially, physically -- even for kids who are perfectly HEALTHY.
2. Tyson is a teenage MALE -- who wants to have control of his life -- who isn't able to talk to other GUYS about his feelings.
3. Tyson is a teenage male ATHLETE -- unable to get rid of that excess "drive" because of the MG.
4. Tyson is not living with his MOM -- who would be nurturing, putting HIM first, holding his hand, soothing his feverish brow.
5. Tyson is in DENIAL -- he has a horrific disorder that he will have to live with for the REST of his life -- and he hasn't really even BEGUN to live.
6. You CANNOT "counsel" people over the internet -- face-to-face interaction IS required. You MUST be able to see reactions, read body language, hear changes of pitch in the voice, etc. -- as Tyson said, we have NO clue what is going on -- because HE isn't TELLING us everything -- and we cannot SEE him to gather more clues.
7. If Tyson's family loved him enough to get him out of an unhealthy situation (from what he told us) with his parents, I think that they love him enough to want him to "survive" MG.
8. Teenagers tell you what they WANT you to know. Tyson, if you are reading this -- I LOVE you sweetie, but I am GONNA tell the TRUTH!! Teenagers are often "manipulators". They "angle" the information to their best advantage. This is PART of the "growing up" process. Read any adolescent psychology textbook -- this is NORMAL!

Tyson has a therapist -- but, I suspect that he has been using this group to avoid confronting some issues that would be best served BY his therapist.

So, having said this -- again, I am NOT a doctor -- I am NOT a psychologist -- I have ONLY been a teacher and counselor. I have a Master's in Counseling -- Emphasis in Secondary Education (grades 7--12) I worked as a middle school and high school counselor for 9(?) years. I do NOT want ANY harm to come to Tyson -- I have grown to love him dearly -- as if he is one of my own students.

Alright, all. I hope this will be my last post yet i feel as though I cant leave this thread like this.

Annie- I NEVER said you should now what is going on. I MAY not be getting the care I need from my doctors. MY aunt and uncle are finally doing what they should be doing. Im glad. Yet, YOU are saying that IM overmedicating, as are all these other people are who I think are completely wrong, they dont know my situation.
Sorry that what I said hurt you, but to me that is the truth, and im sorry if it made you very upset that was not my intentions, only my belief, and CHEMER, that is reasonable for me as well, you are not supporting my ideas so your being completely condradictory.

Annie again i did not mean to hurt your feelings, but im not sorry for what I said because it is what I feel.

CHEMAR- To me, this makes no sense. I came here for support, and I gave my honest answer back, and your ridiculing me for this. Which is fine, but you hardly ANY of you understand whats going on in my life, not saying is horrible or great, you just dont know, so saying that i need an intervention, is funny to me. You may think im a nieve 17 year old. But ive been through more as a 17 year old than many have at 40-50.

So, please if you you dont know my story completely try to judge me.

Desertflower- Thanks for that story, yet ive talked to my doctor about over medicating and they all say no to this. Maybe when i go to college and am forced to get a new doctor things will come out as that, and ill let you all know of this. Thank you very much for your help, and ive given in to the idea that my problems are from medications, and im okay with that.


Jana- THANK YOU a million times. IM glad someone on here seems to understand what its like to be a teenager dealing with this at this time. I know many of you have talked about what its like in the past, but right now, its when i needed you all to realize.
Although I dont agree with some of you post, such as the manipulation piece and denial piece. I talk about everything with my therapist and i know thats hard to believe but its true.
But thank you again for everything youve said here. Youve really captured everything im thinking.


After my ER visit i was put on doxycycline and had all the clindamycin drained out.

thanks again for everything.

Tyson, I am not sure where you find in my post that I ridiculed you? not at all!
I suggested that it was unfair to ask people for their opinions and then get upset at them for giving them

people can only base their perception of your situation on what *you* post about it

you have left most of us with the perception that you are often very sick and in crisis and that your doctors and your guardians dont take it seriously



I have a son with chronic illness, now 20yo and so I know what it is to be young and sick

the overwhelming attitude of everyone here has been to support you and offer you as much advice as they could to try to help you.

I know I speak for all that we hope you will find healing and the best care possible

I am locking this thread now as perhaps all has been said that can be