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Lottis
Health Professional
| Joined: | Sun Jan 21st, 2007 |
| Location: | Sweden |
| Posts: | 256 |
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Posted: Fri Jul 17th, 2009 10:24 |
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I know, Barney, how hard it is to get out of living nightmares and how much fear it creates. I know because I have spent a lot of time in that state. 
What I have learnt is that how hard it is, I must never give away my power to fear of the worst out coming, even if the reality points that way.
If I give away my ability to respond with a focus mind, to difficulties, I lose control and fear the worst. 
So try hard to not fear and wake up from the nightmare, it does not help you to stay in that state. In fact the opposite is true, you lose more power if you give up your hope.
I know that you are extremely tired now, but I also know that you are an extremely powerful woman under other circumstances, so rest your mind, rest your body and your spirit and keep hoping for the best to come. 
I love you dearly
/Lottis
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HTN,LVH,CHF,arrhythmia,hypercholesterol,IBS? fibromyalgia?salivarystones,gallstones,ect...|15feb-07 init. 1,25D 37,5,|25-D 7,8(latest 15/2-07)| Ph1 29/7-08| Palliativ Meds. at the present; |Zoloft|NoIR's|covered up|disabled|
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Freddie Ash
Member in Phase 3
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Posted: Fri Jul 17th, 2009 12:53 |
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HI BARNEY
This is Fred in WV. Barney you have to take care of yourself first or you can not help others. You and I know that you are a fighter in these type of things so as you have told us all, "HANG IN THERE WE WILL MAKE." We are still praying for you and your family.
It does drive us "nuts" to have to be home to do some things that have to be done and we are not able to see our love ones who we know need OUR help. I am sure they are in good hands when you can not be there.
I think right now the whole world is going crazy, not just your whole wold. This happens to us in our life serval times in most cases.
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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patrickburke
Moderator
| Joined: | Mon Jul 12th, 2004 |
| Location: | United Kingdom |
| Posts: | 449 |
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Posted: Fri Jul 17th, 2009 17:30 |
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Barney,
You are a star .
Pat
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Sarcoidosis/lungs; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; covered since 6/04; Noirs off 6/07; Min light avoidance| Pat's Story|
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JanEE
Member in Phase 3
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Posted: Fri Jul 17th, 2009 19:07 |
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Barney, everyone has already said it, so I won't repeat. I just want to remind you that your experience with the MP has taught you what may help you cope with waiting for Jessica's improvements. And that is that we have to feel worse, and go through setbacks, before we get better. It doesn't happen in a straight, upward line of improvement. Maybe hanging onto that will help you through this. I think of you every day and know that you are standing strong. Please don't worry about us. We'll be happy to have you back when you are ready. Take care.
Prayers too for your Amanda. She has been such a comfort to you through your MP journey.
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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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 2232 |
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Posted: Sat Jul 18th, 2009 05:24 |
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Dear Barney,
It must have been the straw to try to break the camel's back to have your beloved pet sick too. I just can't imagine how you could deal with losing her right now.
Deb actually treated her yorkie with mino for what seemed to be a stroke. And wouldn't you know it, the treatment seemed to actually help.
We are holding you gently in our hearts, awaiting the time when you see your great-grandchildren free from fear and your granddaughters well again.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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BARNEY
Moderator
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Posted: Sun Jul 19th, 2009 06:08 |
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Once again..........THANK YOU ALL FOR YOUR KIND WORDS AND FOR YOUR PRAYERS
We have seen some improvement....more spikes in the brain.
Please continue prayers....they are needed.
I am posting some, cause MPers need the help, and it keeps me occupied and I am sure that is helpful to me.
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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Lottis
Health Professional
| Joined: | Sun Jan 21st, 2007 |
| Location: | Sweden |
| Posts: | 256 |
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Posted: Wed Jul 22nd, 2009 07:00 |
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BARNEY wrote: I am posting some, cause MPers need the help, and it keeps me occupied and I am sure that is helpful to me.
• Acute phase
Are you absolutely sure that you are not in a chock? 
If you are in a chock, to help us, would be an escape from reality, instead of handling the emotions. That is not being helpful to you. I give you a link below, about dealing with traumatic crises.
tuesdays.
/Lottis
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HTN,LVH,CHF,arrhythmia,hypercholesterol,IBS? fibromyalgia?salivarystones,gallstones,ect...|15feb-07 init. 1,25D 37,5,|25-D 7,8(latest 15/2-07)| Ph1 29/7-08| Palliativ Meds. at the present; |Zoloft|NoIR's|covered up|disabled|
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Lottis
Health Professional
| Joined: | Sun Jan 21st, 2007 |
| Location: | Sweden |
| Posts: | 256 |
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Posted: Wed Jul 22nd, 2009 07:03 |
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BARNEY wrote: I am posting some, cause MPers need the help, and it keeps me occupied and I am sure that is helpful to me.
Are you absolutley sure that you are not in a chock?
If you are in a chock, to help us, would be an escape from reality, instead of handling the emotions. That is not helpful to you. I give you a link below, about dealing with traumatic crises.
http://www.estss.org/ewots05/ew05_files/johan01.pdf
If the rest of us would pledge to help in the forum, would you then rest your spirit? If we pick a day in our week, each one of us, and write it down here, so that you know that we are helping, would you trust us better then?
I think I can take tuesdays.
/LottisLast edited on Wed Jul 22nd, 2009 07:13 by Lottis
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HTN,LVH,CHF,arrhythmia,hypercholesterol,IBS? fibromyalgia?salivarystones,gallstones,ect...|15feb-07 init. 1,25D 37,5,|25-D 7,8(latest 15/2-07)| Ph1 29/7-08| Palliativ Meds. at the present; |Zoloft|NoIR's|covered up|disabled|
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BARNEY
Moderator
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Posted: Wed Jul 22nd, 2009 13:20 |
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Lottis,
I have screamed, cried, fell apart, shook to pieces and did all of it all over again. My body feels like every nerve in it is staying on alert, some nights sleep is good and some nights, I wake often. I am taking some very long naps in daytime which is probably affecting my night time sleep....but I learned on MP to sleep when the body allows it.
I cannot sit here and just dwell on it........is she going to make it and come too and be normal again or are we going to watch her waste away.
I need to keep me occuppied so that I can stay somewhat sane. I have never in my wildest thoughts, even thought that I could have lost 7 of my grandkids at one time.......and never dreamed that they could be left w/the worst of thoughts that everytime it lightnings we run for our lives. How crazy, how bizzare can it get? and right after my son almost dies from a heart attack followed by open heart surgery w/a new aorta valve.
Lottis, you or anyone else are free to post anytime you would like, but I will keep posting also.
So, Lottis, in shock? Yes, my head is still spinning and I don't know when it will quit......but I am still doing MP, which has kept me from going over the edge. I am still trying to save my own life as well as trying to help MPers do MP so they can save their lives.
Wow!!!! what a crazy world we live in.
You hang in there girlfriend and keep fighting...just as I am doing.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
Last edited on Wed Jul 22nd, 2009 13:30 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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Deedee
Member in Phase 2
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Posted: Wed Jul 22nd, 2009 15:16 |
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Barney, we all handle shock and trauma differently. My daughter, who I adopted from foster care, had PTSD from a traumatic childhood so I have become a minor expert on PTSD over the years.
Helping others is a great way to handle your emotions. There is also nothing wrong with giving yourself a break from the trauma by escaping in a positive way by focusing on something else. Distraction is often used in therapy to control invasive thoughts and crushing anxiety. There is only so much reflection and processing of emotion one can do after such a traumatic event.
Dwelling on and ruminating over what you can not control is not helpful, and can exacerbate depression, nightmares and anxiety. Some people set aside a time of day to worry, pray or think about what has happened and use distraction and mindfulness techniques to get through the rest of the day---it a way "switching the channel" whenever one in danger of falling into disabling anxiety and despair.
I have told a number of people about your family tragedy. I hope it is a comfort to you and your family, that regardless of the outcome, you have people all over the world keeping you and your family in their thoughts and prayers.
It is a comfort to me to know you have the support of an extended family and your faith community, and all of us here on the MP site. Lottis is a good friend to you and she has you in her heart as you go through this difficult time. You set the pace and know we are all in your corner.
We appreciate all you do to help us on this site.
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Sarc in lymph nodes. D14. Back to Phase I, 100 mino Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Spleen pains. Began MP 8/08
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marion villa
Member in Phase 3
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Posted: Wed Jul 22nd, 2009 22:30 |
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Barney:
You are a very wise woman, you listen to your needs and know what to do with them, you know how your mind and body behave, and you do what you can when you can.
Isnt it HEALTH? mind health, and the body health is coming to you with this MP.
I send you love hugs and prayers for your child and for you.
Luve ya girlfirend!!!
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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BARNEY
Moderator
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Posted: Thu Jul 23rd, 2009 00:24 |
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UPDATE:
Jessica's mom called a meeting of all the administration of the home she is in and let them know what she was not happy about....they called in those making errors and all is supposed to go well.
On the doctor's command today: she stuck her tongue out 3 times, squeezed their hand and actually sucked on ice chips put in her mouth before swallowing them.
The doc's said to be careful.....that she hears everything we say (which I was sure of before). When I talked with her, she would make a crying jesture w/her face/eyes, and would calm when I told her I would be back in the morning. She also had a crying effect when I told her I had spent the evening w/the babies. She misses them I am sure even tho she still is not talking. Her eyes also open on command.
Your continued prayers are very very much appreciated.
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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Freddie Ash
Member in Phase 3
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Posted: Thu Jul 23rd, 2009 02:17 |
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HI BARNEY
This is Fred in WV. Thanks for the update. It sounds like a very good sign of a recovery soon. We are still praying every day for you and your family and that all will recover and be home soon.
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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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 362 |
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Posted: Thu Jul 23rd, 2009 02:58 |
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Barney,
Jessica seems to be making some progress. You know from being on MP how long the body can take to heal itself. I think in this time of modern medicine we tend to forget this how long our forbears took to heal.
Take heart Barney, bring her back to reality gently her whole being is trying to find her way home. It will come.
I thank God you are such a strong person and that you have a wonderful family who support each other. Take care Barney and rest easy,
Lynn
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Alaskan Dave
Member in Phase 3
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Posted: Fri Jul 24th, 2009 04:07 |
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Dear Barney,
Hang in there,
Alaskan Dave
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Sarcoidosis/eyes, lungs, MP 8/03, NoIRs, low lux home
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BARNEY
Moderator
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Posted: Sat Jul 25th, 2009 19:45 |
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UPDATE (a little now)
Things are progress.......slowly.......but all good. I have so much to tell you I am going to do it tonight when I am at my daughter's house so I can tell you all that is happy. A truly inspiring thing about getting hit by lightning and what happens next.
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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LH1953
Member in Phase 3
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Posted: Sun Jul 26th, 2009 07:39 |
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My computer was down the past 2 days, and I felt anxious not knowing what was going on with you and yours. I can not tell you how much YOUR situation has impacted my life.
We MPers know and understand just how precious life is as we struggle to keep going for a better quality.
As always, wishing all a speedy and full recovery. May all our thoughts and whishes for you and yours embrace and give the strength needed to endure the future.
Living in Florida, lighting storms are severe. I now have a whole new respect for Mother Nature.
With all my love, OX, Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Lottis
Health Professional
| Joined: | Sun Jan 21st, 2007 |
| Location: | Sweden |
| Posts: | 256 |
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Posted: Sun Jul 26th, 2009 10:25 |
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| I am so, so happy for you about the progress news!
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HTN,LVH,CHF,arrhythmia,hypercholesterol,IBS? fibromyalgia?salivarystones,gallstones,ect...|15feb-07 init. 1,25D 37,5,|25-D 7,8(latest 15/2-07)| Ph1 29/7-08| Palliativ Meds. at the present; |Zoloft|NoIR's|covered up|disabled|
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BARNEY
Moderator
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Posted: Sun Jul 26th, 2009 21:43 |
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UPDATE:
There is so much to tell you, I don’t know where to begin….but since any of us can be hit by lightning, I guess I will tell you what has been going on w/ Jackie first….this is FYI:
Night before last, on our way home from the hospital/nursing home, there was a storm coming, but Jackie was the only one who knew it, she said she could feel her body tingling all over. When the lightning started striking where we could see it, we were in the house, she was lying on a twin bed we had put in the living room, telling her mom/dad, their friends and myself the story of what had happened when they originally were hi. She said she remembered nothing from the time it hit her to the time she came to. About that time, her eye started twitching, then her hand started a big twitching action and then it went one part of her body at a time until it reached her legs/feet. She was hurting even worse. Pain meds did not seem to give her any relief at all since this all began.
I did not get to discuss this type situation with any of the youngins….but they are still really scared when it even rains. Alex’s ruptured ear drum seams to be on the mend. They attended their daddy’s funeral and from all information I received, they did really well even tho it was almost 100 degrees out. The Patriot Motorcycle Gang, was there to see no one showed up to cause trouble because he was an Iraqi War Veteran. A beautiful military funeral plus the D.O.E showed a large attendance (he had just stopped the Army career and became a US Marshall and his first assignment was to start the day after he died. Jessica still does no know yet.
Now, Jessica…..of course you know that they are shoving Vit D in her feeding tube with the protein feed (similar to Ensure). She’s smart, she has been vomiting it up quite a bit.
She is not in a coma….she is (as her mother puts it)….minimally conscious…..and is responding to family, friends and staff….ie. She will tell us yes or no, by sticking out her tongue, blinking her eyes, or shrugging her shoulders. Yesterday Jackie was talking to her a lot and their daddy said shrug your shoulders if you want Jackie to shut up…that was a big shrug….and Jackie told her she better behave herself. She has shrugged her shoulders for 2 of her children, stuck out her tongue for her mom/dad/me/nurses/doc. Yesterday the doc (nurse practioner) asked her to wiggle her toes and she did on her left foot (left side has been the least responsive). She gave her daddy a ‘Miss America’ smile, she tried to chuckle at a joke he told her (can’t make any sounds due to trach). We played a joke on her…she answers the phone for a man who owns ‘jumps’ for kids to bounce in and she in the past, had gotten upset (not verbally) w/some of the customers who were annoying. So I called her dad’s phone and he held it up to her ear while I pretended to be a real nutty customer who wanted a jump in an hour inside a small apt on the second floor….we got a lot of reactions from her about that.
There is so much of her coming back to life, she cries a lot, I believe she is in a lot of pain and I am sure that it is both physical and emotional. When her 18mo old wouldn’t stop crying in Jessica’s room the other day, she got real upset and they had to take Malorie out of the room so she would calm. I think emotionally she wanted to help her and was so very frustrated that she could not.
To each and every one of you who have lifted her up in prayer, I am so grateful to you and please continue to pray for her complete restoration. Her babies need her. Alex (7) held her arm while the RT gave her a little ice and she swished it around with her tongue.
Again thank you all for your kind words, your support and your prayers, as we continue to watch her recover.
Luv to all, 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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Deedee
Member in Phase 2
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Posted: Sun Jul 26th, 2009 22:21 |
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Barney, thank you for the update on your family and of course, I will continue to remember them in prayer, as I do you.
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Sarc in lymph nodes. D14. Back to Phase I, 100 mino Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Spleen pains. Began MP 8/08
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