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Karon
Member in Phase 3
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 68 |
| Status: |
Offline
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Posted: Sun Oct 18th, 2009 14:47 |
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So My Dear Barney......
Its been another week....... Jessica, Jackie , and you are on my mind. I can feel such progress and am wondering what great events in healing have taken place with you three girls???
How are your Grand Babies doing???
I am hard-up for an update   !
Missing you Barney........
Love and laughter...
From 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 18th, 2009 16:40 |
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So my dear Karon,
Thanks for asking, this is really not an update, but just sorta what's happening now.
We are going to fly up to Denver to spend Jessica's birthday and have a party for her (all her family and Jarrod's too) on Oct 29. We will update after they (the hospital doctors) give an update Oct 30 (I hope it is good news, cause that is her birthday).
She is able to see colors (and know them) and to see shapes but not anything real descriptive like faces (saddens her not to be able to see her babies faces).
The tendons in her arms and hands are shrinking and they are trying to cast her arm so that they can keep pulling them back out (very painful). Can't use her arms/hands to hold babies or feed herself.
She still cannot stand or walk. She says she will and I believe her strong will power will get her thru.
She did talk w/me on the phone for quite a while...while Denise held the phone for her (she also dialed the phone for her). She is still getting her speech back, and she is having a hard time with some words, but the mind the doctors told us she would no longer have, is still there and even better. The only days she forgets are July 4,5 and 6th. Probably a good thing.
Grandbabies appear to be doing well especially since the lightning season is over. Alex's ear seems to be healing.
Jackie is much improved but is one very busy sister seeing to Jessica and her babies. We booked a 2 bed motel room so that she can get away for a little while in the evening and night to get a much deserved break.
I worry for the grandparents tho...they are so very stressed, you can see that they are barely hanging in there and my heart aches for them.
As for me, dear Karon, I am recovering so well on MP, I have made it thru really amazingly so well, I am shocked how well.
Will update after our visit so I can see for myself.
Luv, Barney
Last edited on Sun Oct 18th, 2009 16:46 by 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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BARNEY
Moderator
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Posted: Wed Oct 21st, 2009 04:18 |
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MP DAY 1947,
MP meds: BENICAR 40MG @ 4 HRS,
nonMPmeds: Zyrtec prn, pain med prn, tylenol prn, not much used.
I had tried 60mg Benicar midnight/6am and 40mg noon/6pm until yesterday, restarted 40mg 6/10/2am and 6/10/2pm.
I found that I got increasing insomnia from the longer dosing of Benicar. I have almost always done frequent Benicar dosing. I am feeling sleepy again w/next to no insomnia. Will monitor this.
Otherwise feeling pretty well.
I am trying really hard to get my diet to the low carb diet. It is hard for me to do this as most of my life I have been a carboholic. To me, bread is like cake. I have a low carb bread that is delightful but still can't eat much of it.
I am trying to work on getting my 25D back down to 10 or less. I had it there and was very bad w/food & a lot of sunshine travel (for emergencies/honeymoon) and it went back up to 17. Darn, I try to help others and am not even helping myself. My discipline is lousy. Also, my sugar levels are extremely high and not able to take any of the diabetes meds (including insulin) as they make me sick and never lower the glucose. Oh well, I just gotta get it together.
Posting tonight so I can remember how I am doing since I noticed that when I had the Benicar spaced farther that I did not think of words well or remember well. I was really feeling like I was starting Alzimers (sp?)
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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Dew
Member in Phase 2
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Posted: Thu Oct 22nd, 2009 17:26 |
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Dear Barney,
I can imagine how you must be struggling with diet at a time like this. When we are under huge stress (and you certainly are right now!), it is hard not to reach for the easy, comforting carbs and sweets.
It is not really that you are lacking in discipline .-- you are going through a terrible ordeal. And yes, you do need to look after yourself even when you are looking after others, or if not actually there and helping them, then you are probably worrying about them.
So if you slip with diet, just forgive yourself, don't judge the behaviour because it will only make yourself feel worse -- just get back on the wagon again. As your grandchildren and great-grandchildren gradually recover, hopefully you will be able to start to relax more and not feel as much of an urge to reach for mood-altering foods.
One thing I found really helped when I was in a similar cycle, was that when the urge to reach for chocolate or bread or sweets or whatever, struck, instead I would write in a journal about my feelings right then. Often the urge to eat just passed and as I got my feelings out, it also helped me see patterns and work out issues. That only works if you have time, but perhaps you do have the time.
At other times, what I have done is eat a piece of fruit I really like instead (I stocked up beforehand so it was convenient to get right away out of the fridge). If you have diabetic issues, fruit might not work for you in the kind of quantities that I used to eat it in!
Another tactic I have used successfully is to say to myself, not now, but in 3 hours (or some arbitrary time period), then I will have some. But in 3 hours often the craving had passed and my discipline was back, and I no longer really felt it was worth accepting the damage I would be doing to myself by eating whatever it was I had previously wanted so desperately.
Another thing that might work, is relaxation exercises. This takes a bit of effort to learn thoroughly enough that you can rapidly put yourself into a very relaxed meditative state. If you can get into a sufficiently relaxed, meditative state, your brain waves change and the craving may pass, and thus your "discipline" may be back and you will feel calmer and more in control, including of your diet. This technique might also help avoid insomnia, as when I do this, I tend not to stay in the altered brain wave pattern, but just fall right to sleep! Might be done at bedtime if you DO want to sleep!
I wish for you the strength you need to go through this very difficult time, and relaxed healing for yourself and your family.
Good luck!
LR
Last edited on Thu Oct 22nd, 2009 17:35 by Dew
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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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BARNEY
Moderator
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Posted: Thu Oct 22nd, 2009 19:29 |
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Hello LR ( &Dew), and all MPers who PM'd me,
Thank you all for your responses and I appreciate all your help, but....it is strictly a matter of DISCIPLINE.
I have never had discipline since I was a child and would give my parents fits and end up with a spanking over some of it.
LR, the nerves have been calmed down for some time now....the shock is over and now we have our minds (and hearts) set on helping the family pull Jessica totally back to full health. Plus, I did what Trevor said and cried my heart out (w/o the use of drugs) which made me happy....I hate pills. I experimented a little w/Honey's way of taking Benicar, but returned to my 40mg Benicar every 4 hrs around the clock. It is a pain in the neck to take at 2am, but works, so I will do what works for me.
The first 2 to 3 yrs on MP, I was the Poster Child (Meg often called me that). I did it all by the MP book except for bacon and some sugar. My overeating in the last 1/2 yrs has caused the 25D to rise...I refer to birthday/anniversary/mothers days celebrations....at the big Chinese resturant w/all the egg drop soup, the shrimp, the crab and any other thing including sweets that I should not eat. I have been so bad that I actually deserve my 25D score.
I have never tried to get to the degree of food descresion that including buying special meat, etc...for one....I could not afford these special foods and I live 30miles north of the Mexican border and 60 miles minimum from the nearest town that I could possibly buy all these things. So never tried that part but did do good w/o being that severe. One time...when I said to Meg that Ranch dressing should not be eaten, she told me I was nit picking. I made my own w/o eggs yolks. I did go to the extremes I could make. I had given another MPer my egg white recipe for mayonaise, which I think is now on the MP site, you just go further w/it and make Ranch dressing.....but I have been very lax in watching all of it.
I have always been a carbaholic and a severe sugarholic. When I lost my kidney they told me I was diabetic (1995)....but last night as I was reading all the PM's and reminicing and I remembered that my reading in the docs office that day was 150....back then, that was not high at all. The thing that is starting to help me now is....that any sweets made w/flour and sugar is making me have severe nausea, so that should help me calm down. You see I have a real anger that I cannot eat like others in my family/friends can eat like. For almost 20yrs now, I have had to watch everything I eat..........I hate that. Sometimes the anger subsides and I do well, but when the anger shows its ugly head, it is a fight to the finish.
Also, you have to remember that my more than 9000 miles of travel in 3 months added to my 25D score.
I do not normally tell all in my posts, but I guess it is out in the open now.
I also have another problem, this body of mine, wants to do the opposite w/everything including meds/food. It is very trying to me.
Well, I am going to send this before I lose it into cyberspace.
Hope some of this helps you understand that I know why my sugar is high and my 25D went up........I bad.
HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY
PS I have the longest fingers nails I have ever had in my life....I used to bite them clear back to the quick....this only happened in the last 9 months. I am really delighted just seeing them and they are really strong. barney
Last edited on Thu Oct 22nd, 2009 22:33 by BARNEY
____________________
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: Sat Oct 24th, 2009 03:31 |
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Barney,
You are bad, but you are very good and special too.
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 26th, 2009 01:05 |
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Thank you Rev Dennis.....you are very special too.
Karon & all, Jessica could read cat and run from a paper...HOORAY!!
To all MPers,
I need to explain a possible misunderstanding in my posts:
I have gone thru all abx combos in the MP during the first 2 1/2 yrs I have been on MP. I have been on Benicar only since Sept 2007 (I did however use Mino up to 100mg twice, but stopped it as I did not feel it was helping). I have continued to heal immensily on Benicar only because my immune system took the place of the abx.
We no longer insist that everyone needs to complete all abx combos. Your immune system kicks in and it replaces the abx.
I hope I am not confusing anyone.
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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Karon
Member in Phase 3
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 68 |
| Status: |
Offline
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Posted: Wed Oct 28th, 2009 18:02 |
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BARNEY!!!!!!!
YES! YES! YES!
AWESOME my friend.
Sometimes I can't read CAT ! or add 2+3!
More miracles are on the way!
STOP beating yourself up for LAZY Diet. 
IMHO your just where you are supposed to be......You will do better...I bet just talking about it will help you to make better choices...I suffer from the same lazy diet without any of the challenges you have!
Your talking about it helps me to examine myself. 
I have gained 20+ lbs.
I know I will get back to good in time with patience and better choices as soon as I can tolerate some exercise on a regular basis. Right now ....IT KICKS MY ASS! soooooo I must be patient.,,.........and deal with a little more junk in my trunk 
So very good to get your update....Thank YOU
Love and patience to you and ALL of your loved ones. 
Karon
P.S. I bet you wonder (as I do) how the MP could help Jessica heal.
Hmmmmmm Maybe some day not to long from now
____________________
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: Fri Nov 20th, 2009 02:21 |
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I forgot (and I apologize) to put this post on MP, so here goes.
UPDATE # 7:
We flew up to Denver CO to spend Jessica’s birthday w/her (27th….on Oct 30th). We ended up in the middle of a blizzard, I have not driven on snow in years…nor had I ever driven a front wheel drive vehicle. Well…needless to say….my nerves were so bad that I was sick to my stomach for 2 days after arriving.
Back to Jessica….she can see color and form and movement….they believe she will recover all her eyesite since she has recovered so much already.
Her tendons in her hands, arms, legs and feet are still a problem. She cannot use her arms much at all but is finally getting some (a little) relief with the use of Botox and now they are trying phenol alcohol to kill off the nerves so they can get her arms to straighten and supposedly the nerves will regenerate. The pain is really bad.
She does not walk, but I went to and helped w/helping her to stand 3 times in one day. It took 5 of us to hold her ankles, her knees and get her on her feet. It was in a big therapy room and there were lots of other brain injury and spinal cord injury patients in there doing their therapy. Jessica’s babies were rooting her on yelling Go Mom Go Mom and almost everyone in the room was laughing and cheering.
She tries so very hard and to see the tears run down her cheeks from the pain….I almost had to leave the room cause I started to cry.
But….despite the docs originally saying she was brain dead……she has all her brain power back, is choosing her course of recovery as well as meds that she is willing to take and what she is willing to pay for as per finances for herself and her children. AND….she has a great sense of humor that is fantastic. She told everyone she wanted them to be quiet so she could pray….her prayer was …. Lord, please let my hands/arms heal so that I can spank my kids. She said they have really gotten spoiled. Jackie told her that she did not think God would grant that request.
Jackie (bless her heart) is the most devoted sister…….she has only left Jessica 2 days since all of this has happened. She is there doing everything for Jessica and being a second mom to the 4 babies. She is very happy to be doing this. Mom and Dad are also there almost constantly for support.
We spent 9 days gone and I did quite well except for a day and a half that I spent in bed (I believe) due to the stress of dealing w/the blizzard/driving.
She will be in Craig Rehabilitation Hospital until Dec 18, at which time she hopes to walk out of there on her own power and her own legs.
Luv,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 Nov 20th, 2009 04:26 |
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Wonderful news and update on Jessica! No doubt she will accomplish whatever healing she sets out to do...afterall, she has good genes from Gma Barney.
hugs, Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld'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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JanEE
Member in Phase 3
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Posted: Fri Nov 20th, 2009 07:45 |
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Thanks for the update Barney. Sorry you had such a rough time in the blizzard. I don't imagine that was much fun. I know I sure wouldn't be able to do it.
Sounds like Jessica is really making progress. She is so lucky to have such a wonderful sister. I pray she will be home to celebrate Christmas with the family. Take good care of you too.
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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Freddie Ash
Member in Phase 3
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Posted: Fri Nov 20th, 2009 13:19 |
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HI BARNEY
This is Fred in WV. Thanks for the up date on things going on there. You and your family remain in my prayers.
I know what you mean about the driving in the snow. When I was still working I would try to get behind some one to drive because it was so hard to be in the front driving and being able to see ahead. The good thing is that you made it and everything turned out fine.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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