its me again

[ger715]

Deb,
I still struggle with depression. Once you get that deep into it, it is always there; just eventually learn the signs and like I mentioned; just need to go out; if only for a walk; but get away from those thoughts that take you to a dark place.

I hope you find a church or some sort of group in your neighborhood. It is good to mingle among others; of course, you will have to give them a chance; they are often dealing with their own uncertanties and doing the best they know how.

Glad you are able to share your feelings here. I kept my feelings of depression to myself for years. It was only after my children became adults that I mentiond some of what was going on. I was always one to try to cover up my feelings. Better to share.

Deb, I agree with Alffe about tapering off meds. I think the pharmacist is a good place to discuss this with.


Gerry)

[Addy]

Hi Deb,
Its very difficult for me to imagine having to quit my meds because our medical system can't/won't help... living in Canada, I know I'm very lucky to have the help, should I need it. I will admit, due to pride, there have been times I've cut my pills in half or gone a few days without them until my next paycheck arrived... but that's my choice and I have hidden this from my family and friends. I go through horrible withdrawal symptoms when I don't have my SSRI (Celexa) and I truly hope you're not suffering with that right now.

Alffe has given you a great link to a forum which can possibly help you with your MG.

I understand your yearning to help others... as that's a familiar feeling for me, too. What I've learned is that I'm not much help to others unless I'm in good form. I think, as Moms (women), we're wired to nurture... and it takes a lot of soul searching to love ourselves and nurture just ourselves! You're not in a great position right now... you are suffering and need to hold on to your energy and love... take care of yourself. Make yourself number one... work on who you are now that your children are gone (so to speak).... I know... easy to say... but we all need to be reminded, right?

One of the most healthy choices I made this year was to remove toxic people and situations from my life. It was/is difficult to break old habits and I still creep back into them when "confronted" with the reminders of what I've chosen to avoid.

You're on a healthy path.... you're HERE! Hang onto all the positives in your life... and cull out the negative... slowly, but surely, you can do it!

[dewcole]

Hi everyone,
Thank you for all the great replys. I do have hope and I want to have a healthy mind. This is my goal. I have for most of my adult life taken 2 steps forward and 1 step back....but I was able to do it. Your health is your own personal gold mine.
I live in a very tiny town of approx 1600 people. The nearest MG organization is in Atlanta. I worked all my adult life, but got sick too early for ss I suppose,and the fact I had no insurance to go to the doctor so I just toughed it out. Not knowing it was destroying my neuromuscular junctions. All I am saying is...
I have been on this forum for a while. First because I was found to be extremely B12 deficient, so I went on the vitamins forum. I got dx with MG in Oct, so I moved over to the MG forum. They are great people there, but sometimes I get really depressed reading about all their treatments and things their drs are doing. Going to the mayo clinic and so forth. Not that I begrudge ANYONE help. I don't. So I came here, to try and let my feelings out to like minded people. Alot of people have someone they can ABSOLUTELY depend on. I have 2 sisters, who both live here. This was our parents land and came to us. There is still a mortgage on it. One sister lives off a very small amount of money as she is disabled. My older sister who is also disabled has a husband who works as a contractor overseas, and makes in one year what most people don't make in a lifetime....she is threatening to move and leave me and my sis here to *go down with the ship*. It's because of me. Everything always has to be about her, and her kids and grandkids can come and stay as long as they want. Mine on the other hand is a 2 week limit and she monitors all food. It was never this way when my parents were alive. This has always been home to all the grandkids, the only stable one they have ever known. Now it is all threatened, because of me. I feel like she has pushed me into a corner and I can't take it anymore... I already feel bad about myself for being unable to contribute. So I now refuse to let her have any control over me.. I will not be indebted to her anymore. She acts like it is a big deal when she pays for my 40.00 a month dr visit. My meds run about 50.00 a month.
I just cannot do this anymore. I don't expect anyone else to really understand...Most people would say to get over myself.
I would take a walk if I could, but my MG limits my whole life. It was left untreated for so long. I don't understand everything about it either. It is rare. About 1 in 150,000.
Anyway, I just wanted to say I don't just sit here and expect someone else to carry my load. I make myself get out. I went to the store today to get coffee. I do everything I can, to help me. Maybe someone else would do it better, I don't know.
All I know is right now, not taking my meds because I can't afford them, and trying to get someone compassionate enough to REALLY hear is too much. It is out of my hands....God is Good...
Thank you all for your caring replys...
as always
deb

[Addy]

Its sounds to me that you are doing the very best you can ((Deb))... and are to be commended, that's for sure!

Keep sharing... you're in a safe place here ... pull up a chair

[ger715]

Deb,
What you have at the bottom of your posts "TO THINE OWN SELF....BE TRUE" says it all.
You are doing the best you can and still being true to yourself. Thank you for calling this to my attention. That is a message that is well for most of us; myself included, to adhere to.

Gerry)

[Alffe]

Deb, Hope springs eternal. I am hoping your sister will get over herself and I am hoping that you will hang tough with that same hope in mind.

Many drug companies have 800 numbers and real people to talk to...could you swallow your pride and call them...explain your present circumstances and see if they will help with the prozac. I hear you when you say that you don't want to ask/take help but you are worth it...your children want their mother alive....so do we.

[dewcole]

Hi everyone,
I have had a couple of really rough days and nights. I have been on the computer as long as my body will let me sit here, and my fingers type. I found alot of resources on the Muscular Dystrophy site, since MG is a neuromuscular disease. I am going to call the SS dept on Tuesday and talk to them about getting help with my meds.I have also went on PPA, need to finish the forms and submit them.
I have even looked into signing myself into a clinical study for MG. I went on Yale site, and they don't have any for MG at this time. Although Yale is one of the few places I researched that deals with neurological diseases that cause fatiguable muscles.
I was really getting discouraged, and I went on the White House site, and sent President Obama an email. I just told him exactly how I felt, and I was crying so much I don't remember everything I said, but I do remember saying if I have to live like this.....well then I don't want to.
Today I got a call from a woman from a SS office in Maryville Tn. She asked if I had written an email to the White House, and I didn't want to live like this? I said yes....She gave me her direct line and the suicide hot line #. She will be looking into my case on Tuesday... She knew it was in the appeals state, federal level, as the judge has already denied me. I felt like because I lost my job, due to illness, and couldn't go to the doctors to have enough records to satisify the judge, and in his words "you looked and sounded fine".
I don't know what this will bring about, but I have never been a quitter, and God knew I was about to quit. So He is sending hope my way, that I CAN keep fighting!!!! So I am at this moment happier than I have been since I recieved my denial letter in Jan of this year.....
It has given me my second wind, so to speak......I have hope that they will help me get connected to resources, services to help me get to the best possible me I can be.. I don't want handouts either. I want to help...in some way....in someone's life.
I had to tell all of you who replied to my posts with such positive thoughts....THANK YOU, THANK YOU, THANK YOU!!
Hopefully when Mrs. Ballard calls me on Tuesday I will have even greater news....right now, I Thank God for this forum, and the blessings He has given me....
Signing off....in a wonderful state......of mind
As always,
Deb

[Addy]

Wow... that's wonderful news!

Keep up the good spirits... yay you!!

[Alffe]

Oh Deb, sending you positive thoughts for good news on Tuesday! And I hope you can continue to feel the love and support we have for you.