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Old 01-15-2009, 08:58 AM #1
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Default Checking in, and yes...I still have MS

sorry, I havent been around much. I have gotten busy trying to live my life, instead of watching it run circles around me. I had reached a place of self pity, and grief for awhile, and had myself cornered. I am trying to get out of bed, get out of this house, and get out of my corner.

Had my MRI, and yep...still have MS. Still have a brain tumor, and still have no idea what tomorrow holds. I still have neuro deficiets in my left foot, ankle, leg. The glioma hasnt grown, and the MS appears to be "resting". I have a new MD at the big girl hospital who is a nuero/oncologist, so two ...count them...two mints in one! He is very nice, quite thourough, and I was happy with his attitude, and sense of humor.

So, this is me checking in. I am sorry I havent been around much. Since I quit working in other areas (freecycle, church websites, computer repair, the "other" website for MS, and a whole host of other stuff) I have tried to find other things to fill my days. I am walking when the ice/snow permits, we are taking drives in the car and listening to books on MP3. We have decided to sell this house in this very isolated town, and move back towards family, and very missed friends. This is a beautiful place, but soooo isolated! we wanted private not isolated, and the family really would be quite helpful at this point. I guess I will be busy washing, painting, and caulking.

So, let me wave hello! and say thanks for all the wonderful emails, and letters of encouragement I have received. You have all been simply amazing. I do count many of you as sisters/brothers. I promise to try to check in once in a while, and see whats going on.

Much love to you all!
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Old 01-15-2009, 09:39 AM #2
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No need to apologize for your absence Dej! Just glad to hear you're still taking care of what's important first, you
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2004 to present - Trigeminal Neuralgia
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March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 01-15-2009, 09:50 AM #3
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yeah what the smart one said j/k ya Laura, welcome back Dej, sometimes we get cornered, bfd you got out of the corner thats what counts,

keep on truckin one day at a time
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Old 01-15-2009, 10:15 AM #4
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Deb, Hang in there. Doing things that you enjoy like walking and listening to books sounds like a good idea. I was just thinking about you the other day, and wondering how you were, Really! (I am going back on copaxone and it made me think of you and our conversations about it and other dmd's.)

I think moving back toward family makes alot of sense. Hope you can get over your blues.
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Old 01-15-2009, 10:22 AM #5
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Glad to hear you are doing well. Hang in there! We all get cornered like that from time to time. Just know that we all understand.

Moving closer to family will be a good thing for you. You have been talking about it for a bit now and I am glad to hear you are finally going to do it. Take easy and rest while fixing up the house. Don't overdo it! (yeah, like I'm one to talk. LOL)
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Old 01-15-2009, 10:40 AM #6
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Glad to hear you're dealing with things...and now a move! I hope that this will help you feel better...
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Old 01-15-2009, 08:05 PM #7
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Staying away from us to live your life? How dare you?
I'm glad you're making the changes you need to make. I hope everything starts looking up for you ~ you sure deserve it!
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Old 01-17-2009, 08:17 AM #8
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I am actually working hard on taking my life in new directions. I had worked so hard at a couple of message board sites, and had found myself spending great chunks of my day sitting at the computer, and before you know it...its dinner time! I found during my early days of diagnosis that those message boards (this one included) were extremely valueable for my sanity, and education about this pig dog of a disease. I was doing great at learning, and be supportive, and supported when I rolled over to staff. I found it took a great deal away from what I was gaining in knowledge to take care of myself. Now, dont get me wrong, I LOVE to help others, and was thrilled to be asked, but in both spots I found that I was quickly cornered with the nit picky, behind the scenes politics, and found myself quickly handcuffed by the consistantly inconsistant, machine gun of rule changes, and ever shifting sands of the inability to make, and keep a decision. I am NOT NOT NOT going to speak badly of either place, as both held such value to me. both kept me sane, and focused, and moving forward during my panic stricken early days. I will be forever grateful. I just simply wasnt able to do everything I was doing, and found it impossible to keep up.

I have not made my way to the computer very much lately, when that is all I used to do. I used to fix/repair them for lower income, or elderly. I am an avid gamer, and was also the "elder" or leader on 3 message boards for my fav game. I teach alternative health and healing practices, and shamanistic studies, and took on students again after a long hiatus. I ended up in such a bad flair that I had to go stay in the big girl hospital. laying in a sterile (yea right) bed, being separated from my family, my animals, and my ways to relax, I knew something had to give. ALOT of somethings had to give. So, when released, I went home, and cleaned up many untied knots. untied many that shouldnt have been tied in the first place, and got up and walked away from my computer.

I have been quilting again, sewing again, walking again, listening to books on tape again, playing cards with the hubby again, and we are even planing a cruise! its been so nice to just sit back, and sip a cup of tea, and not worry about how many wolves were pecking at my door. I have not been back to even visit so many websites that I used to live at. Havent even been tempted to crack open the door to sneak a peek. I do however sneak over here once in a while and check on ya'll.

I credit so many of you with being so supportive of me, even when I wasnt being supportive of myself. Thanks for that! I get cards, letters, emails, and PMs still asking how I am. I just cant thank you enough for the kindness that you have shown me. You guys rock!
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Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
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Old 01-17-2009, 08:28 AM #9
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Your honest and open sharing of these very personal thoughts will be helpful to many. They already are, actually.

Do continue to update as you feel able.
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Old 01-17-2009, 10:23 AM #10
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hugssssss and good for you!! taking care of YOU and enjoying what life is outside this box..is great!! and if you had too many pulling at you from all over...glad you untied the knots as you put it...and thanks for checking in here!! hugsss,sarah
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