Hello everyone.  It's me again.  I am still dizzy, and i think that it has something to do with a muscle pump that was implanted in me about a year ago.  I told my doctor about this and they can't safely remove it.
Also I am very depressed.  I am losing my will to live.  I have had this disease for 40 years, and an considering hospice care.  I feel like I wanna give up and am looking for objective or subjective encouragement.
Christine

Hello Alice Isee that you live in connecticut.  that means you're a short ride to Columbia Presbyterian Hospital in New York.  Enlist the help of your family and friends and get yourself over there. They are the best  Dr. Connoly Is a MoyaMoya expert and he can be reached at
 1-212-305-0376 He's a neuro surgeon but He can also refer you to one of their neurologists that are moya moya experts.  I'm positive they can help you, they're the best.  
You're in my prayers.  Good luck   Tom Gallucci

Dear Christine,

I can very much relate and I am so glad that you wrote this as I was feeling alone with my thoughts of just giving up.  Awhile ago I wrote DJ privately and told him that I could not longer read/write on this message board because I was so depressed and frustrated with this disease.  I also have numerous other medical problems and I know that it just feels like it will never end- all the searching for good medical help and the quest to just feel good.  It's tiring and overwhelming.  I'm 36 years old and my body is acting like it's 90 years old.  Oh, and today I received even more bad news (can't even talk about that right now!   :'()  Earlier I told DJ that I just wanted to stop worrying about all my medical problems, quit going to the never ending doctor appointments and just live life pretending that there is nothing wrong with me.   DJ told me to "get back in the game!" and you know it just helps to lift your spirits a little to rant and rave.   I'm still depressed but seem to have a new burst of energy and hope to try again to fight/cure all that ails me.  I wish the same for you- just take a break, if you can,  from all the worrying and wondering what is wrong with you and how to fix it.  Regroup, renergize and then keep fighting!  Believe me I know it's not easy!  Please, if there is anything I can help you with, even just an ear to moan, to I am here.  E-mail me privately if you wish.

I don't have answers for you but I just wanted to let you know that you are not alone.  I wish I could reach out and give you a great big hug!  [smiley=hug.gif]  Hang in there!
Lisa

Hello Lisa,  It's been a while my friend I'll keep you in my prayers I miss talking to you and I feel so bad that you're not feeling well.   I'll still push Dr. Connoly in NY at Columbia Presbyterian.  If you everwant to try there don't forget I'm in Jersey and you have a place to stay.( and if you remember we have a fun dog too)  I wish you the best and please stay in touch my friend.
PS dont forget Saint Philomena she's the best.
    Tom G.

Christine,
               YOU CANNOT GIVE UP! I know you have been through so much but it can almost always get better. I know its hard to see now but there is always someone in worse shape than you I have been down a rough time in life from almost the time I was married my son was born with a heart disease had 2 closed heart surgeries as an infant and 3 open heart surgeries at 5 yrs. all in the same year he was not in good shape nothing more crushing to your soul and spirit than seeing your child suffer his whole life, in between those surgeries was constant hospitalizations, hernia removals, glaucoma surgery, hypoglacemia. Then I happen to pass the cancer ward one day and children and adults weak, sad and suffering tremendously then I think WOW maybe things aren't so bad maybe things could be way worse. Then my daughter Mandy diagnosed with moyamoya 6 years after that son passed away falling down the steps whoda thunk it! She went from a week of comatose after 4 major strokes to walking now and talking and rehabing back she still has a long way to go and cannot use her hand but she (21 yrs old) NEVER gave up and neither did we. Life is funny and for whatever reason you were handed this hand as I was handed mine there has to be a purpose behind it and I think part of mine is to try to help people on this site, your story really upset me and you need to pull yourself out of this funk get yourself like was suggested, some time away even if 2 days only and if need be go to a cancer ward or a support meeting of some devestating disease and realize you can be so much worse off. It will make you aware that you have SO MUCH TO LIVE FOR! Please be smart and get help or talk to someone one on one if you need to but you will get through this. I hope my story didn't depress you more, that was not my intention, I just wanted you to here from someone thats had it rough too our whole family has. especially Mandy but she stays so up beat and is happy all the time you just have to dig deep down she says and realize that life is worth living no matter what happens to you, because there's always someone worse off. NANCY

Dear Christine,

I agree with Nancy. You can't give up. I am 30 years old, diagnosed with MM at 29. When I was hospitalized, my initial thought was "why me?" Life isn't fair. Well, I quickly got over that. Maybe it's my personality.

But after a year of rehabbing, I still need a wheelchair and walker. I returned to work 2-4 days a week depending on how I'm feeling  last Sept., one year after my stroke. I work on the 2nd floor and there is no elevator. So every morning I have to climb up and down the stairs.

I have had seizures since my surgeries and other asssorted problems. But I just think that it could be a lot worse. I motivate myself by thinking to give up because of MM is allowing the disease to defeat me. Of course, I had to make some adjustments and life altering changes to accomodate my new "friend". :)

I don't pretend to understand. Because for the thought to give up to even cross your mind, you must have it much harder.

We all have reasons to live for. Just remind yourself of what your's is. I am grateful for my parents, my fiance, her family, my friends and co-workers. Maybe this disease will get me in the end but I'm not going down without a fight. We have one life to live, might as well live it! Afterall, you have all of eternity to rest.

Just a thought.

Doug

Hi Christine,

I have something to say to you from my heart, and I apologize if it offends you or anyone in any way because I know that I haven't any idea what you're going through, but I know what helps me and I feel compelled to share it with you.

I believe that a problem is something you can do something about. If you can't do anything about it, it is not a problem, it is a fact of life and we all  need to learn how to deal with it. This is so important to understand because it keeps so many people in bondage. See, I believe, the right perspective of the problems we face in life is to maintain an attitude that says, "I don't care what I face in life, I know no matter how hopeless or no matter how impossible it may seem in the natural, I have a God that is well able to see me through. He has everything I need. And if He doesn't have it, then He can create it. He created the whole universe." See, you've got to develop an unshakable confidence in God. You've got to be fully convinced that there is nothing too hard for our God. You've got to know that He loves you with an everlasting love. And He's personally concerned about every one of you. He knows your needs before you ask. He knows the number of hairs on your head. He knows your words before you speak them. He's planned every day of your life before you were even ever born. All for a reason. He see's the big picture for our life, but we have to give it to him.
In your darkest night, when you feel the weakest and it looks the most hopeless and you feel so lonely, then your loving Heavenly Father is close as the very breath that you breathe. All you got to do is call out to Him.
God's grace let's you see the world in a new way...it's a gift that can only be felt when you're open enough to except it. I'm saying, you are not alone and there is no situation you're facing that is too difficult for our God. When you go through these adversities and hardships, you always remember God is well able to see you through. Never, ever give up! We all have a purpose.

You're in my prayers.

Mar

Mar

What a beautiful message --amen  amen

Janice

[glb]AMEN[/glb] Mar
When Tyler had his stroke I wondered "Why?" He had been making wonderful progress in speech and had graduated from OT (he has CP), only to have a stroke that affected his speech and took all use of his left arm. He was having to start over.
I kept my mind and heart open to learn why. I learned alot and am now able to understand what we (my kids and I) needed to learn. I can also be very thankful that it took 6 months of waiting to to get the ok for Tylers surgery, because it came at a time that was needed. Even though the wait was hard, the timing was perfect. I won't bother you with the details, let's just say things would have been alot worse if Tyler would have had his surgery sooner. I know that is the oppisite of what everyone says, but God knew what he was doing and He knew what was ahead, so He timed it to perfection.

Hello everyone!  My husband is Eddie with this horrible disease.  I just wanted to say that everyone here is just so amazing.  This disease was unfortunately given to some unbelieveable people and families in this world.  I know how special my husband is and feeling the same about all of you.  It is nice to read such special messages.  Remember,  there is always some one there for you.  Reach out!!!  Michelle

Keep your head up, b/c I feel where you are coming from. That's just the negative vibe trying to come in and ran on your parade., just tell him you already gave. I don't even want to go into my Horror story. You inspire me by still be here after 40 years with MM. I feel your pain, but just ask the Almighty for strength to endure. Remember the race is not given to the strong or the swift, but to he/she who can endure. Be encouraged and I will pray for you and all the other MM's of the world. ;;D