Camybaby,
I so can understand, even tho I am much older than you. Please draw on your strength of your family and God and true friends will come along.
We are all here for you, big hugs from Texas! Annette

Sorry you are so scared and lonely....we are all here to support you and have been through a lot too, so check the posts and keep posting so we can support you too.
If your friends don't speak to you, then it is their loss. You are a wonderfully created person, with unique talents and gifts, and there is no one in the world exactly like you. You are valuable and need to find others who can love and support you just as you are.
So glad you are here....we care....
I remember how scared I was before my thmectomy...it was the "what if" thinking that really made me anxious and gratefully I had my family and a great Christian counselor friend who was able to offer me some support and techniques for finding my way through.....is there someone like a pastor or a support group you can join...the worry makes you scared so you isolate yourself but the only way others can support you is for you to reach past the hurt you suffered at the hands of your so called friends and find real people who will value and love you. I am praying that God will send his Angels to form a hedge of love and protection around you so that you can find some peace..,Hugs, B

camybaby,

I'm so sorry for what you are going thru. I was just diagnosed a year ago and i also had a thymectomy.Do you have family to help you thru it? I am 53, and have a daughter your age. That's a lot to deal with at such a young age. The good news is younger people have a better response to a thymectomy. As Annette said, we are all here to support you. Please ask any questions or concerns you have. You are not alone. I know how dark things seem now, but you will get thru this.
hang in there!

judith

@Annette: Thank you for taking the time to reply. Over time how have things gone for you having MG? Im still having a hard time facing all of this.

@Momonamis..:Thank you im glad im here to I really need all the support I can get. I have family but sometimes we misunderstand each other so I just deal with all my feelings and Dr. Appts alone. I haven't looked into any support groups around the area because like u understood I wanna isolate myself. I wish I wasn't like this but I was hurt when my friends bail and I haven't been able to look past that. I will try and look into it Thanks you for the advice. How did you do in your surgery? Im seeing my surgeon today for a pre-op what questions should I be asking him I always forget what I wanna ask when im in front of him because im so nervous.

@Judith:Hi Judith its good to know im not the only one with MG. I have family but we misunderstand each other alot so I don't like to talk to them much. I am so scared about the surgery I have a lot of what if's my biggest fear is if something goes wrong and I can't breath or swallow right and of course the pain I will feel. The same day of ur surgery were you allowed to take your medicines you had already been taken for MG? Im seeing my surgeon today is there anything specific I should ask? Thanks for the Advice it means alot to me to know im not alone.

Hello Camybaby,

I undertsand where you are coming from and am sorry that you have to experience this.

I am 22 years old, and found that when I was diagnosed and was explaining my issues to my friends they too didnt truely understand the seriousness of the disease. By the time I went to the hospital and had my thymus gland removed I found that all the people who I claimed to be my friends were not, no calls, no shows, no nothing during my recovery.

It was during that time that I knew the true meaning of FRIENDS. People who are there for you no matter what. If the people you say are your so called friends, then they should be there for you no matter what happens. At a young age, it seems that we have so many friends to call on but as we get older it is known that many of these peope are gone and you may only have 2 or 3 true friends.

Just know that we here are all here for you and keep praying no matter what. I hope you have a good family support system that are with you and know that hear we are your family as well. I know it is tough being so young and I do understand. However, look at this experience as an obstacle that one day you look back on and not something that you have to deal with forever.

Wishing you the best...Much love and prayers.....

Hey girl---i was just up last night thinking about how this disease really weeds out the people in your life that you thought you could depend on. I've had symptoms since last March and lost my voice around the end of April--still don't have one 75% of the time. I would be so excited when i had a little bit of voice to work with and would start calling friends that i missed so much--and usually the call ended with them telling me to call when i could talk because they couldn't understand me. The most hurtful thing for me though is my family leaving me out of all plans--my mother says i'm not dependable enough to be invited to anything anymore and my sister just doesn't bother to call. I even had 2 friends mad because i didn't return their calls (one of them being a doctor that you would expect to have a little more understanding of my situation.) And when i do have a good day and can talk my mother thinks i'm "all better" and says, "so-do you really think you were sick because you seem fine now" If i could scream i would! If it weren't for my husband i don't think i could deal with all this--I know i couldn't. Please find at least one reliable person to educate about this disease and take them to a support meeting---it makes all the difference in the world to meet others that are going through the same thing and even more importantly meet those that are now able to control their symptoms and are living "normal lives now." I wouldn't have believed it was possible before meeting them. If you would like to talk on the phone contact me at mindyadams925@yahoo.com and leave your number and i'll get mine to you. If you don't have family please reach out to others--esp. during these first couple of really rough years. Hang in there!!--Mindy

Camybaby, I'm so sorry you're going through this but I think you've come to the right place. I would second what everyone has said above. Here you will find a group of people who UNDERSTAND, deeply. I would encourage you, too, to find at least one person who you can count on. You are definitely going to need someone to help you after your thymectomy. What approach will they be using? I had mine last August, partial sternotomy. It's a big surgery and a long recovery but, as has been said, you are a prime candidate for having a good outcome. I'm over the surgery part, it took about three months for my chest to feel strong again. MG is a difficult disease to understand (for others) and live with (for you). I know it's too late for your appt with the surgeon but I would encourage you to write down all your questions when they come to mind and ask from the list. That's the only way I remember.
As for the voice, it seems to me the ole voice goes away just when you need it most. That has been my experience this week anyway. Very frustrating.
Big hugs for you,
Cathi