Frustrated.
 

Hello all.

At this point, im going to vent to you all. I hope you don't mind.

Im still sick, the keflex isnt working, infection still on my arms.
Bruising is getting better. But my MG symptoms are back and in pretty full force...

My legs are wobbly, head heavy, arms heavy, breathing a little labored with chest pains and HORRIBLE headaches..some of the worst of my life.


I also feel like im lost and detached from myself, like my soul is walking beside my body not inside/along with my brain and i feel like my school work/grades are horrible and they dont reflect my true ability but i dont know what to do about it..

I feel like this is all my fault, and i messed up my future already.

I hate this.

hope your all okay.

Tyson, As someone who has lived through all sorts of times of being to hell and back to "okay" again, you have NOT messed up your life and it is NOT "over."

In my opinion, you probably do need to take a step back and reassess your life and goals. But that does NOT mean you can't have goals and a good life. You probably have to change your mind about what your life is going to be but you can still have a good life. So many times I have thought that I wanted one thing, life got in the way, I had to do another thing and it ended up being good that it did. Changing your mind about what you're going to do does not mean you are a failure. On the contrary. It means that you have the presence of mind to set yourself up for an even better success.

I got two college degrees. I worked my @$$ off for years in education and marketing. Then I ended up not being able to work. HOWEVER, what skills I had and worked on made me able to both write and change the "hand" drawing I did to the less difficult "computer" drawing. I never thought I'd accomplish anything again, until I decided to write and illustrate a book on doctoring. It took 2-1/2+ years to do, but I did it! This is not my ideal life but it is MY life and I get to decide what it is going to be - within my limitations.

Would your life come to an end if you took a break from school for a while? No. And it would probably help. You've barely had a year to deal with MG and all that comes with it. And you are 18. Your brain doesn't even fully develop until your mid-20's!! ;) The important thing is not the goal but to have fun doing whatever you are doing. And you are most definitely not having any kind of fun. I'm not talking about the "fun" of partying either!

Have you even been to see a doctor about the current symptoms you are having? I know you have spoken to one of your doctors about the Pred. They need to SEE what reaction you are having, even if you are in NY.

You need a once over from an internist. Is this feeling of being detached a reaction to a drug? Is it a deficiency? Is it your thyroid or something else? It's not your "normal" so it has to be something. So get your butt in to see your doctor when you get home. In the meantime, write down everything, every single symptom you are having. A boring plane ride is a perfect time for that.

Chest pain, in case I haven't said this a million times, is ALWAYS in need of immediate ER care. Period. Anxiety or not.

You need someone you can trust and confide in. A mentor would help too. I had lots of guidance early on in my life and it really helps. You can't do this stuff alone, nor should you have to. We ALL need help. And support.

You can deal with this, Tyson, but you have to get out of denial and into the land of realistic possibilities. Only you can get there.

I hope you can work all of this out. You deserve a good life. Maybe put that as a sign up on your wall: "I deserve a good life."

:hug:
Annie

Annie- Thank you for taking such time to write back to me.
I agree I do need to step back from my life as it is right now and look what I need to change and how I'm going to do it. I know I dont want to, and i know, i probably still am in denial yet what else can I be at 18..eh.

For the most part I have changed what I am going to be. Not what I want to be. I want to be an anesthesiologist. But I think I am going to be a nurse ansthesist.

I know my mind will not change about these types of things because they have been so structured ever since I was 14. Yet in all seriousness I know that my body without a cure for MG cannot become a doctor or deal with the stress associated- Hows that for coming to terms?/Denial.

I know i need someone to confide in...but Its hard here at school with no one I know. EHHH idk what to do as far as next semester but Ill figure it out.

My headaches are getting worse/I think they are migrane's. They only come on when Im walking..as with the chest pains for the most part.
I will get them checked out soon enough.

Im not sure why my IVIG isnt working as good as it should, im already getting weak..

Im going to bed! Hope your doing well.
thanks again annie.

Wow! Tyson, I'm impressed. Seriously. The hardest thing is to admit so-called "defeat" and to come up with a new game plan. After that, planning for a different life is fun.

You rest up, take some time to yourself and try to enjoy this silly ride. I'm really sorry there isn't someone - yet - who you can fully confide in. The thing is that they are out there. So many people are willing to help, you just have to ask.

Whatever you decide, taking care of yourself is the most important thing. Everything else will fall into place after that.

I think you are doing damn well for an 18 year old. ;)

Tyson, no way is this your fault, although I do understand where you are comming from.

Yep having someone to confide in is a great thing. I have a sister who I talk to regularly and this helps.
I'm pretty sure I'm still in denial after nearly 8 years......just not as bad.

I'm glad you are looking at life in a different way, you are doing well and will continute to do so, no matter what decisions you make!!!! Sometimes we just have to take a different road in life, not the one we started out on maybe, but maybe just maybe we will find something esle on that road(I'm saying this to myself, as I still find it hard to comprehend:-) )
You take care, and continue to come here and vent, I've learnt alot from you Tyson, and its good to have you around
Kate

Annie- Thanks. Im trying my hardest to do as well as I can at 18. Im not sure how well I actually am, but Im trying my damn hardest.

Kate- Thanks aswell. The road I wanted to take, has dissapeared for now and it may never come back. I wish i could go back a year, im not sure why. But there are many things I wish I could change or have again.

Thanks again, its good to have you here aswell:)

Hi tyson, I hope this reachings you in much higher spirits. I def know how you are feeling but agree with everyone else that maybe you need to cut yourself a break and really try and relax...it was so hard for me but in aug I had to decide to leave my job and as sad and as hard as it was looking back oon it. Trying to work, I was just making myself worst. I also think one of the things about the disease is. The mind games it plays...you feel good one day and then boom you are down the next.....not having had this very long and me being 23 {I'm sure you can relate} it is soo hard to just not do anything. To complete change your lifestylse so quickly. I had a full sternotomy thymectomy 4 wks ago Friday...n I actually was feeling great the last couple weeks but just within the last week the weakness has come back...my dr said it happens and he is hoping with me doing another ivig that will boost me back up. The down fall and with the 40 extra lbs I've gained since on the prednisone...I was suppose to be able to drop it 5mg this thurs...not happening now. Life seems like a total downer...sometimes I feel like I am the only one who has this and no one understands....so your not alone in being frustrated...keep your head up...things always have to get better..
Kim

...not having had this very long and me being 23 {I'm sure you can relate} it is soo hard to just not do anything. To complete change your lifestylse so quickly.


Kim,you are not alone.
In fact, if we look at that from positive side,it's great that in two weeks after surgery (major!), you said you were feeling good,and you even can give your support for others.So nice of you.Things are little different now,but you had good Drs, who were trying to get you MG under contron BEFORE surgery- Pred,etc,so make sure you won't go into crisis during surgery.It did not happen to my daughter: last year , she is 24 ( you can relate),had sternotomy surgery in Nov 09, and being completely without MG treatment,although she was just DX having MG, she went to the crisis, and was on breathing support in ICU for 40 days...Had trach put in , etc .It took them a while to figure it out,and start IVIG,and after it failed,PLEX.
Now, well - good days,bad days, Pred,weight gain,ets,and of course the need to make lifestyle changes....Yes, my dear, it very hard for you all,at so young age all of a sudden get all this,but it definetely need some time to recover from the surgery ( even without MG having this is a big stress for the body),to find right medications,and when it start working,things will be better,it will be different .This is my big hope-- for my daughter and for you
I apologise for my grammar (it's not my native language).I know,it's readable,but still I can not express all I think and feel in this writing.
Kim and Tyson, I wish you all the best.Seek help from the right people only.
Marina

Frustrated
 

Tyson I agree wit hthe others that you are handling this extremely well for being so young. You are extremely mature for your age and have probably experienced more than 99% of other people your age. I just wanted to tell you that I too had the feeling of being outside myself when I was on Pred. I honestly felt like I was watching the world go by from inside a bubble. I am now off of the pred and have seen a huge improvement. I still have days where I am foggy headed but I think a certain degree of fogginess just goes with MG unfortunately. As for school could you take some courses online and that way you could work at your own pace? I know there are alot of us on here who battle with depression from this disease including myself. I have read alot of self help books and books that help people deal with a chronic disease. Maybe you could look into that. Know that you're in my prayers.
Kendra

That's a great idea Dog Lover = going to school on line.

I am currently going to school online and it makes a major difference. You don't have to walk to classes or carry books, sit in long classes, etc. all of that is just draining for someone with MG. I am going to Cappella University. It's fully accredited and has been a great experience. I have learned so much. It's well worth the effort and it's allowed me to manage my schedule as needed. They also have disability services. So, you can sign up for that and it allows you extra time to turn in your assignments. It's really handy.

It's a hard transistion from who you thought you were going to be and who you are with MG, but somewhere along the line you realize: this is who I am. I need to work with myself and not against myself. At that point, you become productive in your new lifestyle.

Keep up the good work!