Great saying about depression
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Kate I am so sorry but having a diagnosis will bring some resolution to your discomfort..I hope. A good friend of mine was diagnosed about 15 years ago..she was experiencing vision problems as well in one eye. It took months to diagnose her but ever since then she has been on meds and has not progressed at all. She even underwent IVF (against drs advice) and no progression. The meds she started on (dont know the name) at the time were very new but now the norm. Its a shot she does every day which yes is a pain in the a$$ but has 2 beautiful little boys to raise. I know you and your family have been through so much and for that I am so sorry.
Just know as always we are all here for you ...whatever you need. My number is listed on my FB and I am a night owl if you ever want to chat and share a glass of wine (I hate drinking alone) give me a call. Text me first though so I know you are not a bill collector
Speaking of which...funny story for the day for anyone needed a laugh. I went to this BC fundraiser this weekend which was great...BUT I ran into my ENT ..you know the one who charged more for my deviated septum than my PS did for all of my recon together. The one I stormed out of his office and havent even heard from since..I was dodging him all evening. I swear every time I turned around there he was..I was ducking behind people...outdoor heaters..the band! But then my favorite 80's classic Flock of Seagulls song came on and I was overwhelmed with the desire to showcase my best 80's moves. Me and a friend were the only ones on the dance floor..I think he spotted me. Seriously he was following me all night long...in his mom jeans and bomber jacket..did I mention he is manorexic about 95lbs wet. I told my ps the next day and he was cracking up at the thought of me avoiding ENT all night. Still fun but gives me a giggle as I know he saw me and was trying to talk to me all night. For the record the crowd loved my dance moves.
Hugs to all that need one! Have a great day. I am not working until January so I will be on a lot more in the upcoming months!! Always here for those who need to talk
Diane
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Claire- Docs had considered MS before but lumbar puncture came back negative so they ruled it out. New doc says current research shows LP doesn't hold as much weight as once thought and I have a few tiny lesions on the spinal cord so.....guess that's my new DX. Now I have a whole new medical thing to start researching. Should have my medical degree by the time I'm old! (Oh wait, am I old now?) Sorry work has been so crummy. It sucks you have to do homework especially on your day off.
barbe- I think we'd like to move someday- or at least bug out during the summer months. But my mom, who is in poor health, and my DH's kids from his first marriage live here so don't see it happening anytime soon. My DS is in high school, too, so wouldn't take him away from his friends. I pretty much just hermit during the summer months the way I suppose you do in the winter? (BTW, have to giggle when you write STD because that stands for "Sexually Transmitted Disease" down here!)
MBJ- Good luck with your new adventure! Have to say I'm jealous, too!!! Good luck with the kitty transport!
Diane- Loved your story! I could totally picture you busting a move on the dance floor! Thanks for the invitation to chat! I'll probably take you up on that- wine glass in hand!
So glad to see everyone posting again. It's been lonely around here the past few days!
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well barbe when i saw std , i thought your mojo was really back! but hope all your paperwork goes through really quick 0
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Diane how funny! Glad you shook up the dance floor!!
Kate I am sorry that you have yet another thing to deal with. A friend of mine was diagnosed last year and there are several types or patterns? Some are in remission for a long time. We will keep our fingers crossed that, that is what you will have. I know you must be so overwhelmed and scared at this point. Good thing you have this group to hold you up when you need it.
MBJ good luck with the move!
Barbe, I am sorry your daughter continues to be so hurtful. Keep hoping that time will heal.
CMblastic I hope this work situation gets better somehow!!
I go in for my fifth surgery in less then two years tomorrow. Revision on both sides. Had so so many complications in the past am quite anxious.
Dear friend I met who was diagnosed in 2009 one month before me is in ICU mets in lungs, bones, liver and having the tumors multiply and enlarge very rapidly. The lung and liver lesions are much bigger then even two weeks ago. I am so afraid she will not be with us for long. I hate this hideous treacherous disease.
I hope you all have a good rest of the week.
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Determined- Good luck with your surgery tomorrow! I know how hard it is to accept yet another surgery. We're torn between wanting to find an acceptable "normal" and wanting to be done with all this. Hope it all goes smoothly and this is the last one ever!!!!
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Diane--you had me giggling outloud!!! Thanks for the image--gotta love those 80's dances!! Maybe the creepy doctor was impressed with your moves and was trying to make a move. . . .eeowww!!
Determined-- big gentle ((((HUGS))))) for tomorrow. Surgery is never fun, but I hope it takes you closer to where you want and need to be. Will be thinking of you!
Kate- I'm just sorry that we have to become experts in our health like this. Remember the day when you would go see your doctor and he would be smoking? Maybe thats one of the reasons why we are all going thru this crap right now!!!
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I remember reading someone else's post a couple years ago about her wanting STD and I wondered why she wanted a sexually transmitted disease!! Now I get it....sigh.
Diane, which song was it?
Kate, I thought MS was diagnosed by sheaths in the brain? I thought that's what your brain scan showed, not your spine.
Dettermined, we'll be there holding your hand, all the way through, good luck! May this be the LAST one!
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Barbe I have been singing the song since Saturday...right up until I read your question and now for the LIFE of me I can not think of how the song goes...it will come back to me..I will post immediately as to not forget again.
Kate...first of all you are BARELY middle age so OBVIOUSLY you are far from old. I think we all earn an honorary medical degree after dealing with all the $hit we've been through. Let me know if you need a research assistant as I have no work until January...have I mentioned that before. I am here for what ever you need!!
determined I had 6 surgeries in 18 months and finally feel healthy!! I was pretty happy with my final recon (although I would love fat grafting...more the fat harvesting part...from my thighs please
!! ) I know how you feel, any surgery stinks and healing and the fatigue sucks even more... but hopefully this will be it!! I wish you all the best for a successful outcome and a speedy recovery! Diane
BTW I was asked to coach my nieces indoor hockey team...I am thinking about it. Would be nice to be around my dream team and they do make me smile...but they play about a 1 1/2 hours from me..big time committment and lots of dealing with Charlie...hmmmm something to think about. Good night all!!
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barbe- I have lesions on both. Someone who has MS can have one or both. I think I read that 20% of people who have spinal lesions don't have brain lesions so guess the brain ones are more common.
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Thanks for all of the good wishes. You guys are so wonderful. My friend's husband called they are moving her home with hospice. She has been an inspiration to all who know her. She is maintaining the honesty of the journey with such grace and class.
Off to do my sage cloth scrub. Gotta love my PS. Surgery at 7. Hospital I am going to is 40 minutes away. Sage cloth again in the morning and I have to be there at 5am so up at 3am! It is ok though because my little friend Ativan has my name on it waiting for me right now. I really think you ladies are wonderful.
peace
DiDel, maybe assistant coach ...... would give you the contact with the dream team and the smiles but maybe not the time commitment.
So the PS marked my boobs up with a purple magic marker right. My hero husband reminded me I probably did not want to put my bra back on because last time it left marks on one. So I am braless which I never do........... not sure why but don't. Anyway so we have to return a rug to a store and I keep laughing to myself. Just my luck I would get in an accident and the good looking firefighter ( I love love a man in uniform) would be rescuing me lift my shirt for CPR and see two boobs are circles and marked up with purple ink!!!
Y
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Kate: any questions you have; PM me. I've had ms for over 20 yrs, and am out of remission right now!!and still kickin" be careful before you agree to any meds. theres a controversy between neuros.. some say its ok to take them w bc history.. mine says NO they're all immnuno suppresants, and open you to mets... p;ease get good info; maybe 2nd opinions. not about having it: the spnal never shows unless its late stagre. the brain/ body mri is the def. test nowadays.. to stay cool, google '"cool vest" it keeps your core temp down. i've worn one for years in fla. they really help..
I KNOW girl: more gear to consider.. there's many of us here, though, you're not alone...{{{hugs}}}}}}}}}}}}}3jays
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In your pocket today Determined! Hope all goes well!!
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Crap Kate! I thought I had figured out an 'all clear' for you!!! I am SO sorry you have to endure this too, but 3jays can walk you through it all.
Determined, we're all here with you, drawing pink squares to match up the purple circles! ehhehehehehe
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Determined I forgot to add that I feel for you with your friends progression. I am sorry you have to deal with that but I bet she feels lucky to have you! I hope you are resting nicely today and feel no pain. Speedy recovery!!
Diane
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Tonight I'm going to a BC fundraiser. Really don't want to, am dreading it, so why am I going? Hmm, haven't figured that one out yet. My friend, and neighbor, is raising money for the Susan G Kroman 3 Day Walk. I always feel like when people around me do stuff like that they think they're doing you some big favor. I'm thinking...no matter how much money you raise I still had cancer and lost my boobs. You might be helping out some other woman (maybe even yourself) (though I doubt it- I don't have much confidence in Kroman doing much of anything for the cure) but you're sure not doing anything for me. But, hey, knock yourself out. Hmm, maybe I should stay home? I obviously have a mad attitude.
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Have been following along. Kate - Being mad is okay. I wrote myself a note on a sticky yesterday "It's okay to be angry!"
You have every right to be.
If you go tonight - just think of it as a light, social event/distraction.
Luv to all of you. Still using your screensaver Kate. It inspires me daily at work and at home!!
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I agree Mad is fine! We all are mad and angry and the degree depends on which day it is... Kate let us know how it goes....
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So funny, I meant to type "bad attitude"- not mad. Maybe it was a Freudian sli? Guess I am a little mad. This is a friend I never heard from once during all my surgeries. (OK, I take that back. She and the other neighbors all went in on a edible fruit arrangement. Very nice but not exactly warm and supportive.) Now she's pouring all this effort into this fundraiser/race and felt like I had to attend.....and shell out $50 to attend.....plus drinks. And felt incredibly uncomfortable the whole time. Next time I think I'll beg off. Just wasn't feeling it.
Oh well, on a brighter note, tomorrow morning I am flying to Albuquerque with my best friend, who also happens to be my older sister, and we're going to visit a girlfriend for the weekend. I won't be back until Monday night. Hoping to have some fun and adventure and if we get in trouble our friend is a police commander for the Albuquerque Police Department! Watch out New Mexico! Here we come! :-D
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Have a wonderful trip, Kate.
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determined, wanted you to know i was thinking about you, and your friend.. have a great wkend , Kate... 3jays
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Kate, how fun!!! Enjoy your time with your BFF"S!!! As my dad used to say, don't do anything I wouldn't do. Wink, wink. My vacation starts in 14 hours, am I counting the minutes. Hell yeah!!!! Going on a cruise next weekend with my sisters. And most importantly I wont be at work. First time off since my BMX. And first time off in a over a year that wasn't TX related. IN fact the only appt I have next week is to see my dentist!!! WOO-Hooo!
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Congratulations on your vacation. Sounds wonderful. What a treat for you. Some of this is getting behind you and that is so nice. I'm happy for you Claire.
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enjoy your vacation
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Thanks ladies. Its funny, I woke up this morning going, crap I didn't do this at work, I didn't finish that. Oh well. I think I need to be hypnotised. Or take a great big eraser to my brain. I worry to much and I just can't let go.. . .
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You'll have to let go once the ship pulls out, Claire! Use that as as visual to breaking the tie.
When people ask me about fundraisers, I smile a small smile, and say "Those kind of things are for you guys! Not people like me who already have cancer." Works every time.
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Claire- Have a wonderful time!!!! You deserve it!!!!!
Barbe- Good response. I'll have to remember that!
I'm having a great time on my Girl's Get Away! Love my DH and DS to death but there's something therapeutic about girl talk. I'm a little sad, though. My DS is going to his first high school dance (Homecoming) tonight and I won't be there. He decided to ask someone after I made my travel plans. My DH promised to take lots of pictures beforehand (my DS's first time wearing a tie!) but it's just not the same.0 -
Kate, I think it's an amazing bonding time for your DH and DS!!!
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Where did everybody go? I had a great time on my girl's weekend in Albuquerque. A little sad missing my DS's Homecoming but DH sent pics. Now I'm home and seem to be in my funk again. I cried uncle and went back on the anti-D's. Do you ever feel you have way too many issues to address, but not sure where to start, so you just spin like someone trying to find the last seat in muscial chairs? That's how I feel right now. Hope you're all doing better than that! lol!
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What a wonderful quote Dawnsm. Reading it brought tears to my eyes. I greatly appreciate your post as well hymil. I am currently undergoing rad treatments (3 down with 33 more to go!) and have just ended a 2.5 year relationship to protect myself from my partner's emotional demands. I miss her but ridding my life of that added stress makes my load so much easier to bear. Thank you for helping me realize it was "essential, not selfish."
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