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Sue Lyons
Member in Phase 3
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Posted: Tue Sep 1st, 2009 06:48 |
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| My thoughts and prayers are with all of you during this time of difficulty and challenge....Sue
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Sarcoidosis/lungs, diabetes II, Ph3 9/07, oxygen, low lux home, limited outings covered up, 25D=08. DLCO=25%'04;DLCO=39%'09
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Sedona
Member in Phase 3
| Joined: | Sat Feb 11th, 2006 |
| Location: | Alabama USA |
| Posts: | 207 |
| Status: |
Offline
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Posted: Fri Sep 4th, 2009 00:49 |
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Hello Barney:
I am very happy to read the good news.
One thing is for certain, the human body is a mystery and its ability to withstand the incomprehensible even more mysterious and often baffling.
No one can say what a person can or cannot withstand.
I know she will make it. But her heart will ache too. I am so sorry for the lost of her husband.
With love and understanding
Sedona
Last edited on Fri Sep 4th, 2009 00:50 by Sedona
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Sedona: Neural/Lung Sarc/ biopsy 9/96 & 9/01| Feb06 avoid light comm Ph1| 1,25D=60 25D=27 Nov06| Ph2 05/06| Ph3 11/06 |4/9/08 25,D=7 1,25D=54| homebound low lux NoIRs| mucinex cont. oxygen|
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BARNEY
Moderator
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Posted: Fri Sep 4th, 2009 04:39 |
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Thank you everyone for your prayers, kind words and encouragement.
UPDATE 6;
Jessica's trach has been reduced from a 7 to a 4 in size. She is eating real food that has been chopped up for her. She has braces on her hands that are helping her get more control of them. She is having problems w/her eyes (swiss cheese effect), but they are working to help her.
HANG IN THERE, WE WILL MAKE IT!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Dianne
Member in Phase 3
| Joined: | Fri Jun 16th, 2006 |
| Location: | Pennsylvania USA |
| Posts: | 123 |
| Status: |
Offline
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Posted: Sat Sep 12th, 2009 00:31 |
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Barney, my thoughts and prayers have been with you and your family.
Dianne
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Lyme EBV CMV HHV6 C. pneumoniae TMJ osteopenia sick 20+ yrs 125D44 25D11 Ph1Jan08 Ph2Jul08 Ph3Jan09 25D7.6 (May08)25D9.4 (June08)25D7.0 (Aug08)25D7.0 (Oct08)25D7.0 (Jan09)25D9.2 (Aug09)25D4.2 (11/09) NoIRs low lux home limited outings covered
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jasmine
Member in Phase 3
| Joined: | Fri May 4th, 2007 |
| Location: | Michigan USA |
| Posts: | 229 |
| Status: |
Online
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Posted: Sat Sep 12th, 2009 19:25 |
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Dear Barney,
We are overwhelmed by your loss and by your amazing courage. Please know that you are loved and appreciated here at the MP, and that our hearts and prayers are with you and your family as you continue the journey toward healing.
Well wishes, Jasmine and the Captain
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PTLDS 53 years,autoimmune thyroid disease,migraine,CFS,FM,neuro pain,arthritis,osteopenia,anemia,scoliosis,IBS,MCS,Lupus?; 125D 45 6/07; 25D 12 8/09; PH1 6/07, ModPH2 7/07, PH2 1/08, PH3 12/08; Synthroid; estradiol patch; Noirs; low lux home.
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BARNEY
Moderator
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Posted: Sun Oct 4th, 2009 23:03 |
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UPDATE…JESSICA:
Jessica has had her trach and her feeding tube removed and is eating any kind of food that she can tolerate.
She had another MRI which showed some oxygen depravation in the area of her eyes and legs. She can see forms (like a duck, but only knew it was a duck for sure because she was at a lake w/family for an outing, in other words, she guessed). She can however tell you what color things are.
She is now able to be dressed (not able to use her hands yet) and wear her shoes all day as she sits in a special wheel chair. Her hands do not allow her to wheel it around. Her index fingers stick straight out while the other fingers bend back so they are taped to the index fingers right now to help straighten them so then they will teach her to bend them later.
She is not walking or standing on her own yet. She has a very clear mind and has been making a lot of her own decisions.
She has what they call swiss cheese eyes and if that does not straighten out they will teach her how to turn her head to make it right.
She is still in Craig Rehabilitation Hospital near Denver, Colorado. They run on donations only and do lots of brain trauma and spine cord injury work. They are looking at Nov 20th going home date, but am not sure that will happen either.
The kids have been with her this week to celebrate Tabitha’s 6th birthday.
You never know what life is going to throw at you.
Please keep prayers for family……they are going thru a lot still.
I thank you all for your well wishes and your prayers, all MPers are very much loved by my family as well as loved by myself.
Luv, Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Limburg
Member in Phase 2
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Posted: Sun Oct 4th, 2009 23:13 |
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Good to hear Barney, the progress in Jessica goes on
How are you yourself?
Annemarie (still crossing fingers)
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MS,DX 1997,Auto-immune hepatitis,DX 2008, MP start jan.2009. 25D: 20.4 (october 7,2009)25D: 12.5 (november 23,2009)
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BARNEY
Moderator
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Posted: Mon Oct 5th, 2009 00:13 |
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Thank you AnneMarie, here is the answer:
DAY 1931 MP, NO ABX SINCE 9/07, BENICAR 40MG @ 4 HRS, MP MEDS
Zyrtec, pain med and Tylenol nonMP meds PRN
Well, it’s been a long time since I have told you anything about me, so here goes:
Since June 18th, 2009, I have gone 9000 miles……son’s surgery and grandkids lightning strike took up around 5000miles and we finally went on our month long honeymoon (9/1 to 10/1) and that was 4000 miles. I drove all of it but about 1000 miles…..sunlight and all.
When all the emergencies happened, I felt like Sylvester the cat on the inside (the younger MPers may not know who that was), but I felt like every nerve inside my body was standing straight out. I made sure that I did not miss any Benicar cause I was sure it was all that was keeping me from a heart attack or stroke. I sat in the hospital waiting rooms and the patients rooms until I felt like I lived there. It was hard to see my son on life support as well as my granddaughter. Dear God in Heaven, no one should have to go thru all of this in less than 30 days or any amount of time, nor watch the granddaughters who put on and paid for our wedding go thru any of this. I did not attend Jarrod’s funeral, I wanted to remember him when he was alive, I did not want to see him dead in a casket. After all, I loved him so much.
This is hard to write, as I have tears in my eyes. I called Trevor and asked him if I should get some valium/whatever and he said just cry, it is the best thing in the world for a person this stressed. He was right, as usual, but it was still an ordeal to go thru and still is.
I know you all think it must be hard to be a Moderator at this time, but if you all only knew how much I love you fellow MPers, you would not question why I spend time trying to help you all. I missed being away from you, but I always checked to see who was praying and giving me words of encouragement. Thank you all so much. I needed it and you did not let me down. THANKS.
To all the moderators who took over for me, THANK YOU SO VERY MUCH. Get all the rest you can, I am back and will help you out.
I have gone so far forward in my healing despite all this, I have been in a lot of sunlight and have had a very hard time to watch the D in my food. When you eat out, you can’t possibly know what is in it for sure, as well as at other people’s homes.
We went to our youngest grandson’s (Tennessee) wedding. It was truly beautiful and the bride was very lovely. They included us in so much of it. We were even in the Jackson TN newspaper because we got married on 8/8/08 and our grandson go married on 9/9/09 and the paper thought that was so cool. (so do I)
My legs got to hurting so bad, I could hardly sleep (Tennessee). I am only on Benicar but, I reduced it to every 6 hrs instead of 4 hrs and the weather changed also and they finally quit hurting. I did do a lot of resting in Tennessee while staying inside a lot away from the sun. I did cheat on the night of the wedding, we all went to Red Lobster after it was all over and I did eat some shrimp.
Have been to Albuquerque numerous times to help w/Jessica, grandbabies and helping our daughter and son in law and w/Jackie. It seemed to help to be able to be of help to our family. My new husband was and is a wonderful help anytime and has really come thru in times of need and just anytime…..I got the best when I got him.
Jessica’s birthday is coming Oct 30th and we will all meet at Craig Rehabilitation Hospital to have a birthday party for her. If it does no snow, I will drive, but if it snows, I will probably fly up as I do not drive on snow/ice (my knuckles turn white).
I am feeling really good today, sleepy, but good. Looking forward to seeing Jessica and family.
I am still on 6hr Benicar, but looking at a change soon, don’t know what yet. I tried a new thing last night that Honey in Phase 3 does. I took 60mg Benicar at 10pm and 6am so I could sleep 8 hrs and today I feel good (plus I forgot my 12 noon pill until 245pm). I will post what I do next.
Love to all.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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RevDennis
Member in Phase 3
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Posted: Mon Oct 5th, 2009 04:55 |
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Barney,
Great to see your report. I know from experience how much you love the MP'ers. Just know that we love you back for all you do for us. Through all of my hard times I have learned how that the moderators and Trevor really do care.
Thanks and know that I am still praying for you.
RevDennis
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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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BARNEY
Moderator
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Posted: Mon Oct 5th, 2009 05:33 |
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Hello Dennis,
I am assuming you are home and I am truly hoping that you are doing much better. Praying for you too.
Sometimes we just need reminding that it's not about winning the race, it's about just crossing that finish line. (Karna’s thoughts)
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 857 |
| Status: |
Offline
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Posted: Mon Oct 5th, 2009 17:53 |
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My thoughts remain with you Barney and it is good to know you are taking care of yourself, as it is so important to do, particularly during times of great stress.
I pray that Jessica continues to recover and is able to return home sooner rather than later.
Hugs, Claire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Scarlett
Member in Phase 3
| Joined: | Mon Mar 3rd, 2008 |
| Location: | Ohio USA |
| Posts: | 127 |
| Status: |
Offline
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Posted: Tue Oct 6th, 2009 15:08 |
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Barney:
Thank you so much for your post, what inspiration.  You are living proof of your favorite saying. "Hang in there, we will make it." We will all make it with God's help.
Love and prayers,
Scarlett
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Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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JanEE
Member in Phase 3
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Posted: Tue Oct 6th, 2009 22:26 |
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Hi Barney,
Just wanted to thank you for the update on Jessica. While she is making progress, I know it's hard with all the waiting, but you/we are all knowledgeable about waiting.
I'm so happy that you got a honeymoon sandwiched into your busy schedule, as well as the joyous occasion of your grandson's wedding. Those are the things that carry us through the hard times, aren't they? And you've done marvelously well with all the travelling you've done. I get the "willies" just thinking about driving the three hours to my daughter's house, which I recently did. It wasn't half bad once I was on the road (with a ferry ride in between).
I'd like to send a big HAPPY BIRTHDAY to Jessica on the 30th. I wish her the gift of getting well and going home with her babies.
Love to you and your family,
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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Aunt Diana
Moderator
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Posted: Thu Oct 8th, 2009 15:56 |
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Barney,
I'm so glad to hear you are doing so well. I honestly cannot imagine what you have been through. You must be a very strong and resilient woman.
I hope things just continue to get better for you. (and for your family)
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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BARNEY
Moderator
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Posted: Fri Oct 9th, 2009 08:11 |
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MP DAY 1936, NO ABX SINCE SEPT 2007 (EXCEPT 2 X MINO), BENICAR 60MG 10PM AND 6AM, 40MG NOON AND 6PM, 20MG PRN, NO PAIN PILLS, NO TYLENOL, ZYRTEC EYE DROPS AND ZYRTEC PRN
I have developed a nodule on the right inside of my mouth which I feel is a canker sore and right next to where my denture sits making it painful to eat but bearable.
I have been trying Honey's idea of being able to sleep past 6hrs sometimes. I have been taking 60mg Benicar at 10pm and then again at 6am and 40mg at noon and 40mg at 6pm. I have been feeling really great and will continue w/this for a while. I feel mostly cured. I just can't wrap my head around to how good I am feeling, almost normal (whatever normal is).
I am awake really late because Denise called after I had gone to bed and so I am sorta wide awake. She called to tell me how well Jessica is doing. It was good to talk w/her cause I know how stressed she is too. We talked about everything and she actually laughed about quite a few things. My heart just aches for Denise and Martin (having to watch your child go thru all this). This has been such a stressful time for all so I felt really good about her laughing. We are going to go help with Jessica so they can take a few days break as well as Jackie. They have been at this for 3 months now with no real break. I just wish I could think of a way to give Jessica a break.
I wanted to post tonight because I wanted this in my post: I blew it last night. I had fallen asleep in the recliner watching tv, had woke up and took 10pm Benicar and fell back to sleep. Ben woke me up at 11pm to go to bed and stupid me in my half sleep picked up and took my 6am Benicar. Thus...in less than an hour...I had taken 120mg Benicar. I told Ben that if I didn't wake up, that he was on his own....he said "do not say that". I was sorta scared, but went to bed and drifted off to sleep. As you can see, I didn't die from too much Benicar and went ahead and took my 6am Benicar (another 60mg). I took about a 4 hr nap after a 3pm lunch/dinner after being out running errands most of day, but that seems to be the only thing that I would suspect as a problem to over dosing myself.
I have never been afraid of taking a lot of Benicar, but have never made this big of mistake in the past. Would not want to make this mistake often, but it won't scare me again.
Nerves have really calmed. Still cry for Jessica some w/her loss of DH and her having to go thru what she is. Also, still cry some....missing Mandy (our dog), but generally doing a lot better than 2 months ago even. I still have not cleaned her nose prints off the inside of the truck windows, just can't bring myself to do it. Still have not scattered her ashes yet, will when I feel I can let go. She was my best friend for years and helped me thru some tough times before I had Ben.
Ben has almost quit smoking and he has started MP. Need to get his 25D test done and start him posting.
Well, luv to all of you for your prayers and well wishes and words of encouragement. It helps me get thru all this nightmare.
Think I will go to bed.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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DNStog
Moderator
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Posted: Fri Oct 9th, 2009 22:49 |
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Glad you're doing okay. I have accidentally taken double doses of Benicar numerous times...never had a reaction and I normally have low blood pressure.
Wishing you better psychological and emotional days ahead. Hugs, Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynaud's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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Karon
Member in Phase 3
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 74 |
| Status: |
Offline
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Posted: Sat Oct 10th, 2009 19:56 |
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I miss you soooooooo! You are so strong and loving. Your MP progress even with all the challenges you have met is amazing to say the least 
So happy to get updates from you. I love to hear about Jessica's progress. Your family seems stronger than ever. Laughter is so healing ....keep them all laughing. You can laugh about crying...very healing indeed . 
I have taken double Beni by accident a few times myself in the last 16 months. I was only anxious the first time...and then just peeved that I wasted the precious pill there after. I'll bet most everyone has messed up this way at least once. 
I have also done this on accident with Mino. 200mg's instead of 100mgs...OOPS. The mino has always worked as an anti inflammatory for me, so It helped during high IP's in my favor when I accidentally took two. I only seem to mess up during high IP's....
The brain fog can challenge you for sure. Now Jake and I lay our night dose and morning dose out on the night table so we can check our selves. We still mess up now and then. We have NO FEAR.
You are one of my heroins.
I wish you and yours a day filled with laughter, love, and strength!
Love to you dear Barney!
Your MP Sis.....
Karon
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LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
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BARNEY
Moderator
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Posted: Sun Oct 11th, 2009 08:30 |
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Karon,
Today was great....my cell phone rang and when I answered....it was Jessica. They had to hold the phone for her (she can't hardly use her hands and arms yet). She is a little difficult to understand sometimes (she is just learning to talk again). Just to hear her voice was such a blessing. She is just learning to stand (assisted by a standing devise) and when I asked her if she thought she would walk again, her answer was a very sincere YES.....no thoughts or questions, just a YES.
All of us are going up to Denver to celebrate her birthday (October 30th). Hopefully she will get to return to her home Nov 20th with her sister living w/her and her parents helping to take care of her also. We will get that news for sure on the 30th.
It is a long road to recovery for her too, but just as I am sure we will recover, so will she.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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JanEE
Member in Phase 3
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Posted: Sun Oct 11th, 2009 19:04 |
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Barney, that's fantastic. I imagine that you were crying, this time tears of joy, when you heard her voice. What wonderful news.
Hugs,
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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Dew
Member in Phase 2
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Posted: Sat Oct 17th, 2009 18:06 |
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Dear Barney,
I am so relieved to hear that Jessica is making such good progress and expects to walk again!
Jessica, the rest of your family and you are hanging in there, and your faith and perseverence is being rewarded.
I pray that this nightmare will end for you all soon, and Jackie and Jessica will be fully recovered.
LR
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Sarcoidosis stage IV celiac environmental sensitivities PH1Dec06 ModPh2May07 Ph2: Jul908 B12 due to celiac, NoIRs regular outings covered up, April 09 D levels were about 7 and the Nov08 1.25 levels were 14.6; No Ph3: abx ended Aug09 - Olmesartan only now
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