I Try So Very Hard To Keep A Stiff Upper Lip For My Friends And Family. I Get Tired Of Trying To Hide My Physical Pain And My Struggles. For Every Bit They Know, Its Really 10 Times Worse. I Don't Want To Worry Them Espacially My 12 Year Old Son. I Don't Want To Scare Him (its Still Unknown If I Have Passed This Curse Onto Him). I Know In My Heart I Have More Blessings In My Life Then Any One I Know Of. I Thank God For Everything I Have And Have Had..........yet..............i Get Sooooooooooo Discouraged!!!!! I Cry Alot (only When I'm Alone). How Will I Know If Im Depressed Or Just Discouraged? If A Anti Depression Med Would Help, I Want One. If Not, Does It Get Better Or Do I Just Tough It Out And Buy More Tissue? Aurghhhhhhhhh!! I Want The Old Me Back!!! I Was The Absolute Happiest Person I Know.
Gayle I understand and feel your pain. I have an undiagnosed LGMD since age 41. Now I'm 47. I always try to be chipper, upbeat, joking and smiling around everyone; and for the most part that's the real me. But once or twice a month I crawl in bed after a rough day and think "What am I going to do?". But you know what....it always works out. LGMD moves slow enough that I have time to make adjustments as needed. Don't wait until it's too late. Get things you need before that point. I've gotten toilet risers, a lift recliner (which I love), an aluminum director's chair that I take to picnics and even indoors at people's homes. All these things help physically and emotionally.
I worry about passing it on to my 2 teenage daughters so I can appreciate that too. I hope you're just discouraged, not depressed. The biggest help for me is that I am very pro-active in my treatment. I surf the internet weekly looking for news and tests we might try. This makes me feel as if I partially control my own destiny. To date I've had 9 negative DNA tests and 3 negative tissue stain tests from my muscle biopsy. But there are over 70 MD's and in many the bad gene is still not known. My biopsy did reveal ragged fibers and cell necrosis.....a classic sign of muscle disease.
Hang in there. There are huge developments monthly. I truly believe we'll see a cure in our lifetime. One of the MDs, Pompe's Disease has already been found treatable and has been reversed in some patients.
I'll answer anything that my experience and research has taught me.
Mark, Thankyou So Much. I Tried To Reply To One Of Your Other Replies To Me, I Think It Was My Original Post But It Never Went Through. I'm New To This Computor Thing Also. Any Way, Thankyou!
Gayle
Gayle, I know this is difficult. I just want you to know that we all know how you feel. Their are some great threads on here with some great advice. It really does help to know that you are not alone doesn't it? I remember searching for so long before I found this site and it was like a huge weight lifted off of me. I could finally get rid of the guilt I had from feeling like I wasn't trying hard enough or that I was lazy.
I hope you have a good support system at home. and don't be afraid to accept help from others, It really does make your life easier at the end of the day. A good friend of mine shed a different light on it for me. She told me by not allowing others to help me I was denying them an opporunity to do a good deed. This part will get easier until then, we are here for you
Gayle
When I became unable to control my frustration and my feelings of being overwhelmed by the disease, my Dr. recommended an antidepress at the lowest dosage. It really helped take the edge off of my emotions. And really if you don't deserve a little something to help get you through the day, who does? You are dealing with a big issue here.
Jodie
