Happy Halloween!
October 30, 2009 1:14am
Had a great time dressing Hope up for Halloween this week! She still comes to me,so I don't guess she's still mad at me.LOL! She actually …
Progress
45 %
Lesa
5:19am, October 31, 2009
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About Me
Lesa
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About Me
Diagnosed with GBS in 1999 and the chronic form CIDP in 2003 after several surgeries.I now get IVIG infusions every other week and also am on imuran.Lately they both are really wearing me out.Have experienced the getting knocked off your feet, the struggle to get back up, and now the challange of accepting that these are my cards and the dealer doesn't always play fair!I am holding a couple of aces though!
Diagnosed with GBS in 1999 and the chronic form CIDP in 2003 after several surgeries.I now get IVIG infusions every other week and also am on imuran.Lately they both are really wearing me out.Have experienced the getting knocked off your feet, the struggle to get back up, and now the challange of accepting that these are my cards and the dealer doesn't always play fair!I am holding a couple of aces though!
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Interests
Haven't had the heart to take my Great Dane Quazar off my avatar yet.I'll always miss him.I love music, good food, and good friends.I am the classic stubborn Virgo.I try to stay positive and believe that trying to be real is very important in life.I strive to be truthful.I am guilty of steering the conversation away from questions I don't want to answer.I have a great family and key support people who make a huge impact on my life.I love DS and my friends here.
Haven't had the heart to take my Great Dane Quazar off my avatar yet.I'll always miss him.I love music,
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Journal
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I'm Back
October 23, 2009 7:21pm
Sure seems that my IVIG is getting harder to come back from. I'm still wiped out and have a bad headache from it. Seeing Marcia again was great. …
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For Mom
October 14, 2009 6:14am
Sometimes my days seem to have end. The bad days just before ivig when the pain is so bad justreally drag. I find myself wishing hours away in hopes …
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Finally back!
October 11, 2009 3:53am
Just wanted you all to know I'm still kicking-LOL!
Hope this was a good batch. The jury is still out
after the late start, but I'm …
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Bad week
October 2, 2009 7:33am
I have to apologize for not keeping up with everyone this week. I've had no energy at all and have been napping ??????? Yes, many naps this week! …
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Hugbook
Hug
yey!You`ve been planting bulbs??Good for you!:) am guessing then ,that the weather there`s better than it`s been here all week?
Driving rain ,and storms ,and tonight it looks like we`ve got more coming!My throat is raw (Def cos of those dreadful teeth!) ,feel like i`ve swallowed a red hot golf ball!LOL...Food is a no no..even tho` i`m desperate!LOL...But ,this will pass ,just like those cats peeing in your garden!!I can totally sympathise ,as ,despite having our own two ,its ALWAYs the neighbours animals that foul our paths and lawns!(UGH!)...Glad you were able to have a word..hope that means an end to it!
Take care mb,..hoping you start feeling stronger every day....would love to chat ,when your up to it ,ok??
got some more of those healing hugs ,and bundles of ,love ,just for the best(est! buddy ever!!TTYS!xoxoxoxoxAlways yb ,sharon xxxxxxx
Ray of Sunshine
Hey there sunshine have a great weekend.. Hope your feeling okay
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Hug
Hey mb:)..Never mind me!How are you?I`ve been thinking ,and praying and just hoping against hope ,that these treatments will make you feel much brighter ,stronger ,and worth everything you go through..
I`m ok...think its these teeth..haven`t felt right since i`ve had them ,and when even in for a short while ,my mouth starts burning ,and i feel naff!:)
Anyways ,take good care of mb,.will check when your on??
Hope we can chat soon...love you loads!Look after you!
Big ((((((hugs))) for you and HOpe!yb ,sharon xoxoxoxo (ALWAYS)xx 
Ray of Sunshine
Wishing you and Hope a good weekend.Big rain storm here and am enjoying it all! Hope you had a good batch of treatments Lesa,and that your feeling good and enjoying watching your team.Hugs and Smiles for you both.
Hug
Well I am glad you are back and over with them again for a month. Sure hope and pray you do much better this time than last !! I've been taking care of your crops .... tee hee ... WOW what a farm !!!! Football ?? tee hee ..... not really my thing to watch .... to be honest !! Was a BEAUTIFUL day today .... got lots done outside so didnt get much sleep in today so will have to nap before work. Here is hopin' you and Hope have a great weekend !! Hugs to ya my friend !!!
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Photos
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Support Groups
Close Guillain-Barre Syndrome (GBS)
Diagnosed with GBS in 2000,and CIDP in 2003,after relapse.I was paralyzed from the waist down,and after 6 months of rehab-went back to work.Now my CIDP is progressive and a lot of days are spent in my power chair.I get IVIG 3 days every other week.It slows the progression down.Neurontin for pain.Imuran added to further suppress my immune system.
Treatments
- Ambien Working / Worked
- could not stay asleep because of breakthrough pain.Ambien CR helps
- Azathioprine Too Soon to Tell
- Imuran added to the IVIG infusions in hopes of slowing the CIDP progression
- IVIG Working / Worked
- IVIG very early after diagnosis,and since CIDP.Balance Master to help me regain balance after initial GBS.
- Keppra Working / Worked
- helps tremors in my hands
- Neurontin Working / Worked
- I've taken this since my first bout with GBS for pain.It's not addictive and works very well for nerve pain.
- Supportive Care Working / Worked
- I live alone and have an aide through Community Long Term Care.I have in-home Nursing care.I've had PT at home and at rehab centers.
- Zofran Somewhat Helpful
- Helps with the nausea from IVIG
- Promethazine Somewhat Helpful
- For nausea from IVIG
Close Arteriosclerosis
I have an ABF graft and have had several occlusions in it.My IVIG is a blood product so they give me Lovenox each treatment day to try to prevent clots.
Treatments
- Angioplasty Not Working
- Lovenox Somewhat Helpful
- Injections of Lovenox on treatment days and when INR is low
- Coumadin Working / Worked
- Will be on this for life
Open Depression
Lesa hasn’t entered any details for this support group.Open Chronic Pain
Treatments
- Hydrocodone Somewhat Helpful
- Take on the BAD days.It helps some
- Neurontin Working / Worked
- The side effect of neurontin is that it deadens the nerve endings,which helps relieve the pain.It is a seizure drug sometimes used for pain.Not habit forming.
Open DailyStrength Members Community
I've been a menmber of DS for two years now.Was very active on chronic pian group until there was trouble,Pulled out and started a group for friends.Also involved in GBS group.I love DS!
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