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About Me
ManaD
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About Me
Wife 32 yr, mother, 2 wonderful,amazing sons, adore both. Sis to 5 unsupportive women, educator, jewelry artist, quilter,for charity, reader & hiker all subject to my brain/eyes/legs working Dictated by symptoms assoc with MS...unexpectedly changed course of my life, forced,undesired early ret, so poor too! Struggling with an obsessive refusal to quit or accept my fate. Trying to find joy, in abilities & life that have become simple & substandard! Some days I manage well others smack me hard!
Wife 32 yr, mother, 2 wonderful,amazing sons, adore both. Sis to 5 unsupportive women, educator, jewelry artist, quilter,for charity, reader & hiker all subject to my brain/eyes/legs working Dictated by symptoms assoc with MS...unexpectedly changed course of my life, forced,undesired early ret, so poor too! Struggling with an obsessive refusal to quit or accept my fate. Trying to find joy, in abilities & life that have become simple & substandard! Some days I manage well others smack me hard!
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Just stopping by to see if you got that dress yet?
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ok so now you know I have CRS (can't remember shit). Someone else wrote to me from Elizabethtown, PA and I got it confused in my head. Lucky you, you live in AZ! Rob now wants to move to New Mexico. Let me know about your part of the woods as you can tell I am NO great fan of VA! Sorry, don't think I am a total dolt, just partial.
Judy -
Ray of Sunshine
Hey maggie,
I can't seem to get my caboose in gear today despite having laundry to iron and major weeding to do. Oh well! There is always manana! I have one son who is 19 and between his Sophomore and junior years in college (that AP and IB credit crap gave him an early start) but he has changed his major to physics and math so my bet is he will be there for at least the full 4 years. He is a bright kid and managed to get a 3/4 scholarship to a state university. His first choice was Yale and he got in but he knew with me not working it would be a strain and he is just as happy where he is (and I like it because he is but 1.5 hours away). He didn't want to work retail or food service this summer so is on campus taking courses (C++ and Chem) and doing an unpaid internship in the physics dept. I think though since being there since June he is tired and wants to come home. Unfortunately he isn't due home until Aug 8 and then goes back 2 weeks later for fall term. We e mail regularly and talk all the time but it is not the same as his being here. I am really feeling the empty nest syndrome.
My husband of 22 years works for the Federal Reserve bank and decided 2 weeks ago while he was on vacation that he would like to retire in 3 years ! I asked where he thought we would get health insurance and how we would live. He said that he thought I probably didn't need my Copaxone and that he was healthy and Cabot could emancipate and get his own insurance. After a "Come to Jesus" he is now back at work and knowing he must stay until at least 55 to get his full retirement benefits complete with health insurance and full pension. Not happy, but there nonetheless. Like I don't have enough stressors he thought we should move out of the country where things are "cheaper". Enough said.
Your sons sound great. You done good! I have had varied careers starting with Hospice Social Worker and then moving to Big Pharma in the lab (undergrad in chem) and then married and worked back in Hospice and then managed a psyche office and did the testing. Finally ended up typing medical transcription at home so to get out of the day care nightmare syndrome and raise my child.
I am originally from the Phila. area. School in MO and grad school in PA. Met my husband and we moved back to MI where he is from. had my child there and moved to VA for Rob's job. Not too terribly interesting but that is all there is.
I feel your family! At least yours communicates with you. Mine just walked out of my life. But quite honestly they weren't too fond of me when I was growing up anyway. I was there to serve and when serving was no longer an option, I guess they moved on.
I had 2 friends who went to E-Town college so know a bit about your area. I miss PA but I am stuck in VA for at least 3 more years. As for my attitude, it depends on what time of the day and which day you get me on. This Copaxone is a really depressant drug but it is what I chose so I will deal with it. My doctor sucks but not much to choose from here so I am stuck with him too. Hope you have better luck with medical care where you live.
So there you go, that is my life in a nut shell. how about you?
I really am going to get up off this stool and go do something constructive now before the rains come. Have a good one.
Later
judy -
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Just thought I would welcome you to DS. I hope you find what you are looking for here. I have been a member for several years and went from being fairly active on line to just checking in from time to time. I have made some great cyber friends here and we correspond via phone and e mail now and one super great lady whom I chat with almost daily here. Some good information but some people who are constantly on here (I guess no life at all) who "know all the answers" and I chuckle to myself as I see others on the form asking their advice! I am totally with you as far as unsupportive family members. My mother and sister walked away from me when I told them I was diagnosed with MS. Never heard from them again. My husband tries to stay in the great state of De Nile and my son is 19 so I DO NOT burden him with my problems. So I am pretty much alone here in my journey. This disease has changed my life dramatically but I am adapting, but still refuse to believe this happened to me. My doctor says I am depressed - Hell yes, wouldn't he be? But as they say, life goes on and today I find enjoyment in things I took for granted yesterday. So happy to meet you and best of luck on the site. Shout out if you need to vent or want to talk or better yet, if you have any great insights into this dreadful monster.
Great day to ya.
Judy
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Support Groups
Close Multiple Sclerosis (MS)
Type: Relapsing-remitting MSTreatments
- Aqua Therapy Working / Worked
- Wonderful supportive group, excellant exercise, helped get me back on my feet. My group was in WA, but we have moved to AZ have not found a group here.
- Betaseron Working / Worked
- I believe Dr Kraft/UW and this drug saved my life! I hate taking the shots, but will! Once taking it my mobility increased, I progressed from ,"near critical" to enjoying some semblence of life again. I will never volunteerly quit. If you have MS and are not trying one of these drugs you are probably making the greatest mistake of your life. Taking an interferon does worry me but not as much as being in a position where, if not for my family, I would no longer wish to live. I have been there!
- Copaxone Not Working
- I was on this drug three of the worst years of my life. It made me extremely ill, did not stop heavy exacerbations and evrey time I had an MRI there were additional lesions and, of coarse additional cognitive and or physical deficits. If there was a positive side..?? I lost about 30 lbs during this time, but not in a good way!
- Neurontin Working / Worked
- Helps with nerve pain, from inflamation, I've been told. Have used it intermitingly over the past 13 years, as needed. Currently taking a higher that usual dosage to help cope with additional pain from a major bought with shingles. Doesn't relieve all of the pain but enables daily function.
- Novantrone Not Working
- have taken it but don't recall what it was for or if it was helpful.
- Physical Therapy Working / Worked
- Helped me stretch, retain some muscle tone and maintain a healthier body because it helped me maintain a form of exercise, though passive, when I couldn't keep moving on my own.
- Prednisone Working / Worked
- Hate it, will avoid it if possible, because of the side effects, however when I been in an exacerbation that will not remit after a few days or continues to progress I am grateful this, for me , usually IV steroid is available. I lie down and take it and pray that it stops the attack. So far it has. I sure wish I could be rid of the belly fat that seemed??? to come along as a result of the high dosages.
- Provigil Working / Worked
- I take this daily.Seems to help, I suffer from episodes of overwhelming fatigue and for this there doesn't seem to be any magic pill. Still, my day to day energy level is somewhat dependant upon my AM dose of Provigil. The energy increase is noted, not when I take the pill but when if don't. Some days I'm seriously dragging no matter what.
- Swimming Working / Worked
- I think it is very helpful, I don't hardly swim as much as I take part in an organized water arobics class. I try to attend at least 3 days a week. When I miss I really feel the difference in coordination and my joints become stiff. The socializing is helpful too.
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