Journal Entry for July 13, 2009
July 13, 2009 3:52pm
ambersneemie
5:52pm, March 30, 2009
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About Me
ambersneemie
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About Me
Turning my misfortune into a mission! I use the positive power in the universe to pummel protaganistic problems! PUGNANDI!
Turning my misfortune into a mission! I use the positive power in the universe to pummel protaganistic problems! PUGNANDI!
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Interests
I'm still interested in a lot of things in spite of the less than active status I have with this wheelchair. I am an avid reader.I love watching the "documentary" channels on travel, real jobs, NatGo, etc. The forensic shows are good puzzlers. I do knit, chrochete, sew, puzzles, computer games, model making, craft, photography, spend time researching on line and managing my daily challanges with MS. I enjoy lerning about new things and am keenly interested in my childrens' interests. Cars, trains, video games, art.I used to cook, fish, hike, bike, swim, run, coach, play ball, garden, carpentry, DIY, and wish I could babysit my new grandbaby, but as she gets more active it gets more difficult for me. I am currently working to become a medical advocate and an MS peer supporter. I have my own business but the physical barriers make it non-profitable. I've been all across the country and back and I've done quite a bit, so being slown down is more an inconvenience than anything else. I'm just looking for new ways to do the old things!!!
I'm still interested in a lot of things in spite of the less than active status I have with this wheelchair.
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Journal
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I was just thinking....
March 30, 2009 6:06pm
I see the picture better now, and I am kind of proud to say that I have been pretty much trying to retrain my …
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Accountable to my Goals
March 30, 2009 5:52pm
For the MS first part:
Today I got a call from the New York Upstate Chapter to see if I was still interested in becoming a Peer Support …
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The way to get to where you want to go, starts with the first step..
March 16, 2009 12:08am
I'm not even sure where to begin. And perhaps I should do the responsible thing and begin when I am rested and focused. I have been …
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Hugbook
Hug
Thanks so much for sharing, you are an inspiration to all of us. Sending Aloha from Honolulu, Dave
Ray of Sunshine
Hi. I don't really want to be signed in...it looks like I need support! All I wanted to do was send you a note, but they wouldn't let me. Don't count on me to keep this going for you though...I'm no good at staying up with this type of thing either! lol Hope you're having a good day. The sun is still out so I'm sending some to you...but hopefully you don't need it anyway! ; )
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Little Love
Hey. This is pretty cool. Hope it's a great way to talk with a lot of others who have great ideas, words of encouragement or just something to say. : ) Glad you're having a good day. Love you, T
Hug
Welcome!! Letter of the law: Either the letters have to be changed or common sense must take over. I'm not in a chair, but I often wonder about a lot of places that have ramps to the entrance, but then a door that weighs ten tons and/or slams shut before one has a chance to move! It is ridiculous.. without common sense.
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Photos
ambersneemie hasn’t uploaded any photos yet
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Support Groups
Close Financial Challenges
Married into debt! We were fine alone, but together we failed!! We spent many years on the roller coaster and presently have matured to where we believe we are more educated about our circumstances and can avoid most pitfalls!
Treatments
- Abstinence Working / Worked
- When all else fails go without!! It helps to cut back and change your definition of success for a while. Take time to really check out the pros and cons of material things and decide if its an impulse buy or necessary to daily living!
- Budgeting Working / Worked
- We've budgeted nearly forty years and taught our kids to do the same.Sometimes it works, but temptations are still stronger!
- Credit Counseling Somewhat Helpful
- We used it only once. It is not the same program now a days and I discourage my clients from using some of them. Some of my clients have been nearly ruined by them.
- Debt Consolidation Working / Worked
- My husband and I are our own clients, and the friends and associates we have helped with our business all appear to be satisfied.
- Earn Money Somewhat Helpful
- My husband and I both worked for years. He sometimes taking two jobs. It hurt the family relationship with his abscence and quality of life was suffering more. It got us out of some of the holes but refinancing was the only thing strong enough to give us the push up we needed.
Close Multiple Sclerosis (MS)
Type: Relapsing-remitting MSDiagnosed June of 04. My only exascerbation so far in Feb07, had several therapies, but believe Novantrone arrested the progress. I have 2 yrs, relapse free and the last 20 mos meeting the challanges of daily living in a wheelchair in a home that is too small for one! It's been eye opening. Took first vacation in 30 yrs and discovered there are few places truly accessable. I came home with a mission. I will be an Advocate for ADAAA and MS. Will be joining Peer Suppot in the spring.
Treatments
- Baclofen Not Working
- Didn't like the way it worked. I thought it made things worse.
- Copaxone Too Soon to Tell
- I'm not sure if it is working since my novantrone treatments, nothing has changed. No worse, no better.It still stings to use it and my thighs bruise and bleed frequently. I use all seven sites and rotate all the time. Some days are easier than others. I use an auto injecter and couldn't do it without one!
- Novantrone Working / Worked
- I had five session and believe that it stopped the progression cold. I have old shadows on the spine and neck and since their discovery 3 yrs ago has not gotten worse!
- Physical Therapy Working / Worked
- I like PT but insurance limits it and makes it dificult to keep on. I bought a 2.4K cycle and have used it a week now and already can bend my legs easier they dont tremor as much and got very stiff when I skipped one day!Insurance wont pay for it but I think it will be worth the investment. I dont want to atrophy and it feels really good!
- Prednisone Working / Worked
- I like the prednisone!! :} haven't needed it for a long time, but used it in the first two years a couple of times and it felt like it helped! Crashed pretty bad when it wore off thought. Didn't last long after the treatment ended.
- Provigil Somewhat Helpful
- Didn't feel it worked enough. Needed better habits.
- Rebif Not Working
- Took this first after coming off a clinical trail that wasn't working. After a year and an exacerbation, was decided that it wasn't helping and switched to Copaxone.
- Solumedrol Working / Worked
- I LOVED this stuff!!! I felt like superman with it. However, my hubby noticed a little more than usual agression. I did eat better, actually had an appitie. The IV hook-up I covered with a sock cut out the toe and heel and left the cuff to cover over the tape, it was less annoying to look at and people don't gross out. But it wore off quickly. Titrated with prednisone, but wasn't that obvious to me if it was working. I haven't had any since Feb 06 when I got it in hospital. No need.
- Swimming Somewhat Helpful
- Only place I can go and not hurt myself falling down!!Bought a pool and plan to use it this year.
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Friends
