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Cocoa
Member in Phase 2
| Joined: | Fri Nov 17th, 2006 |
| Location: | |
| Posts: | 286 |
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Posted: Fri Dec 7th, 2007 11:17 |
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Dear Barb and Pat,
I hope that all our collective thoughts and prayers combine with some well deserved good fortune to get Barb out of this difficult situation asap. Please send Barb my warm wishes and a big hug.
Cocoa
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CFS, POTS, rickettsia, tachycardia, 125D46, MP 8/07, ModPh211/07, florinef for BP, Lamictal, clonazepam, melatonin, NoIRs, limited outings covered up, low lux home, 25D12 Sept 07
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Joy
Guest
| Joined: | Mon Aug 1st, 2005 |
| Location: | Seattle Area, USA |
| Posts: | 250 |
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Posted: Tue Dec 11th, 2007 17:08 |
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Dear dear Barb,
I'm so sorry to see you're still having such difficulty. My thoughts and prayers are with you also.
Sometimes, Barb, ya just gotta listen to those docs, though, and I would encourage you to get the gallbladder removed as it sounds like it is really in the way of further healing. I had my own removed 25 years ago, and the surgery techniques have come a long way since then.
My ophth. said three weeks ago that I could not wait for eye surgery, as I was hoping to do until after New Year's at least, so I had it two weeks ago (cataract and drainage problems/scarring fixed). Not easy to go through but I'm so glad it's behind me now and I can focus on the future (no pun intended!). JaniceW has had gallbladder surgery on the MP, and came through fine. So anyhow, my untrained advice is go for it, get it over with, and you will feel much better for it. I kept Benicar throughout and it really has helped.
I'm so grateful for all the help and support you've given me at the Board this past year,
Loving thoughts and prayers for healing, from all the way in Seattle,
Joy
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CFS, FM, MCS, RA, Uveitis, Neuropathy, MGUS, porphyria, low thyroid.
Non-MP Meds: Armour Thyroid, Lotemax steroid eye drop (3/day). Milk thistle, lutein, calcium, probiotics. NoIRs, gloves, hat.
Began Ph 1 9/06, Phase 2 1/07. 25D: 32,17,5,4,4
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Tue Dec 11th, 2007 18:37 |
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6 and a half weeks in hospital.
This is Aussie Barb - home now for 30 hours.
I am still very weak.. but I am home. I couldnt bear another night there, or another canula in my arm bearing IV fluids and antibiotics etc.. - no more, so I insisted on leaving, with their blessing..
I have more of an opportunity to remobilise at home here. Walking is like trying to walk in molasses. I am very weak but my walking has improved already since coming home.
Our house has had rails and other home assists done while I have been away.
MP meds: None at this point. I was taken off the 2 Benicar in this last week because of low BP (and other symptoms of collapse) when they weaned the Dexa too quickly. I havent reinstated it yet.
Other meds: Dexa swapped for cortrate for easier titration and weaning. Cortrate 25mg BID, Diabex, Insulin 25u/s BID. and blood sugars stable.
Light exposure: full light continues from hospital stay
Symptoms: Immunopathology: high level continues. hasnt stopped.
Skin: is dry, 'clumping', grainng, etc etc.. have to vaccum the skin from the bed daily.!
GI inflammation/symptoms continue from pre hospital: excruciating, tearing burning pain on bowels moving. no bleeding at present (caused the anemia). (I have read the FAQ and havent been able to achieve tolerable so far. I will now have an opportunity to try a few more things) At this point I have discontinued the hospital antibiotics to try to find a way to solve the lower GI pain. what will happen now? one step at a time.
dry mouth:
2 L littlest fingers and feet still numbish, pins and needles.
Diaphragmic/Gall area discomfort: I believe the actual cholecystitis began from the immunopathology generated by giving me the antibiotics in hospital.
Body swelling: has decreased some in hospital. so I have some wrinkly skin also. hopefully the decrease can continue?
Feet: are highly pufft as a sign of the high level of immunpathology continuing.
weakness: can only do a small amount at a time, and have to rest.
Plan: to gain some strength and further mobility and perhaps , hopefully, be able to visit my parents and kids and do some shopping etc.. things I have not done, nor been able to do for a long time. To do so, I am going to have to find my way thru, one step at a time as to what next for my Health.
The Op?: The Medical team would like to see the op sooner rather than later.
Before I left hospital, I spoke with the anesthetists re a Gall Bladder op . They tell me that in my present condition, an operation is risky and I would need to go away to a Hospital where there are highly skilled professionals.
Thank You for your Presence, presents, all the bright beautiful flowers, cards, thoughts, and messages - I have been very mindful of you All, and your support has certainly helped me to weather this most difficult time, when I have wondered at times if I could rise to the challenge.
Pat has been, and continues to be, a most wonderful support to me.
I must close here. Love from AB... 
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dr Trevor Marshall
Research Team
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Posted: Tue Dec 11th, 2007 19:06 |
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Great to see you home Barb.
I would need to go away to a Hospital where there are highly skilled professionals
It would seem to me that the staff at the base hospital did a great job. Those rails and home-assists will also prove to be wonderful, I think
It's Christmas in two weeks time (you have probably been too busy to notice). I tend to rank my memories by "Bad Christmas in 2003 (when the pulmos threw out my first sarc paper)" and "good Christmas in 2005 (when my first molecular paper was published)". We have a landmark coming up this year with our new paper. This Christmas should go down for you as a landmark, too, I think
ps: while you were away, a paper came out showing that Dandruff was due to a tiny skin fungus, so all that skin loss is probably not unusual as your immune system restarts..
http://www.reuters.com/article/healthNews/idUSN0644353620071107
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CelticLadee
inactive member
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Posted: Tue Dec 11th, 2007 20:13 |
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Tears of joy to hear you are home now! You are amazing Barb writing us when you have been through so much. You truly are an angel to do it!  I am just so happy to know you are home! Praying somehow your gallbladder, etc. can heal so you won't need the surgery. But I know we all must do what we must do during the tough times. But I have this hope anyway. 
Hope you won't overdo it. Please focus on resting and enjoying your home now. God bless you and your wonderful supportive husband.
Sending you my best thoughts, prayers along with a big warm but gentle hug from me. Take special good care. xoxoxox  CelticLadee
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FM Dx 9/2002| Pericarditis Dx 7/2002| CF migraines MCS IBS food sens <Shingles 2001| NoIRs/ZO 25% cream| MP8/04| PH2 1/05| PH3 7/06| 25D/1,25D: 27.9/63.9 (07/04) 25D: <4 (02/08)
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Deb Grabetz
Member in Phase 2
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Posted: Tue Dec 11th, 2007 21:44 |
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Ditto on those tears of joy in hearing you are home Barb! You have been on my mind daily..and in my prayers daily...It is wonderful news! May the Holidays be truly special....all the best...Hugs!xoxoxo Deb
(You have a great guy there...most would run for the hills...)...
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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IngeD
Member Advocate
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Posted: Tue Dec 11th, 2007 22:04 |
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Dearest Barb. It is so wonderful to see you posting and to see you have actually made it home! I hope you can avoid the op and that you will find a way to calm things down now that you are at home. And I pray that you will be able to visit with your loved ones.
Much love to you and to Pat! Inge
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Rickettsiosis per neurop chron bronch adhesions IBS pre-diabetes HTN 125D51 Ph1Jan07 25D26.4(Dec06) 25D12.8 (Jun07) 25D8.4 (Jun08) Valium NoIRs limited outings covered lo lux home Ph3
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ShrnHml
Guest
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Posted: Tue Dec 11th, 2007 22:29 |
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The best news I've heard in a long time! How wonderful to be home, sweet home with your dear (and incredible) Pat. Whatever it takes, do that visiting and shopping as soon as your body allows. Your spirits need lifting after this ordeal. A tsunami of love and support is crossing the Pacific as we speak, or write. XOXO...............Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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PTMKaren
Member in Phase 3
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Posted: Tue Dec 11th, 2007 23:07 |
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Barb: We are both so glad you are able to come home. Please do rest as much as you need to, and know that we are thinking of you and praying and hoping that you are getting better each and every day. We wish you were close enough we could give you some of our homemade soup and bread. :0) Hugs.
Chris and Karen
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Lyme/RA 4/06, 1,25D78, Hubby w/sarc,Toprol/BP, soy patch/HRT|,calcium supp, Apr07 25D9.8, work, NoIRs, lowlux home, Ph3 3/07
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Sandy M
Member in Phase 3
| Joined: | Mon Jul 19th, 2004 |
| Location: | Eugene, Oregon USA |
| Posts: | 205 |
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Posted: Tue Dec 11th, 2007 23:41 |
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| Great to see you home Barb. Best hugs and wishes from Oregon. Keep on keeping on my friend. You are an inspiration and a constant source of joy to us all. Sandy
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Sarcoidois/lung,lymph,skin, suspect heart & kidney, MP2/04 MPh2 9/04, ph2 5/05, Ph3 12/9/05, light r/t work, cover up, NoIRs, low lux home, Percocet, Zyrtec, Ibuprofen
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Morris W. Milnes
Member
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Posted: Wed Dec 12th, 2007 01:08 |
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Barb,
I am so happy to see you home. I send you a great big hug.
Morris
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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Frans
Member in Phase 2
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Posted: Wed Dec 12th, 2007 02:01 |
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Dearest Barb, welcome home ! We missed you !
Love, Frans and Ellen
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Shadowfeet
Member in Phase 2
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Posted: Wed Dec 12th, 2007 02:11 |
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Dear Barb,
You have been on my mind a lot, and in my prayers. I'm so glad that you've been able to come home.
Do take it easy, one baby step at a time. I do hope that you can see your family for Christmas.
Gentle hugs to you,
Mel (Shadowfeet)
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CFS Thyroiditis Endometriosis Raynauds 125D34 25D<7Dec07 Effexor Lyrica thyroxine clonazepam OCP NoIRs limited outings covered up Ph1Sep07 ModPh2Dec07 Ph2May08
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 584 |
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Posted: Wed Dec 12th, 2007 02:28 |
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Dearest Barb ... ... you are truly unsinkable!
You have been so kind to so many, but now, please be kind to yourself.
And laugh as much and as often as you can.
Maybe some angels can visit your home ...
... Carrying Heavenly joy & laughter to you!
All the best.
~Joyful~
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Lyme Babs? Bart? | 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | cal/mag lysine hydroxyzine valium | rarely leave house NoIRs cover up low lux home | 25D15 Oct08
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grazyna
Member in Phase 2
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Posted: Wed Dec 12th, 2007 05:59 |
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What a great surprise to see you posting again. It has been a long time away from home, I can only imagine how much you must have missed it. I am hoping that your op can be avoided and you will continue gaining strengths. Thank you to Pat for keeping up with the regular updates. Wishing you all the best.
Grazyna
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14y+fatigue, muscle and joints pains muscle weakness tingling ricketsia panic attacks|3/3/07 1.25D-70,25D-34,12/07/07 1.25D-54,25D-20 12/4/07 Beni Q6H| 7/5/07 Mino| date Mod ph2|
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Vicki SA
Member in Phase 3
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Posted: Wed Dec 12th, 2007 07:30 |
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Welcome back Barb.
I hope things settle for you soon and you feel more in control.
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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BARNEY
Member in Phase 3
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Posted: Wed Dec 12th, 2007 07:59 |
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Barb, glad you are back in your own bed.....when you are ill your own bed feels best.
Continuing prayers that you improve greatly.
HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Wed Dec 12th, 2007 19:05 |
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5am Thursday 13th December
Thank You All for all private and posted messages.. I am sorry I am unable to reply to all. I will post what is happening here, as I can do so.
The main job at hand still seems to be managing the immunopathology.
MP meds: I was taken off the 2 Benicar in Hospital. Restarting yesterday.
Other meds: Cortrate 25mg BID, Diabex, Insulin 25u/s BID. blood sugars stable.
Light exposure: full light continues. ie with blinds and drapes over windows. not outside.
Main symptoms:
GI inflammation/symptoms continue from pre hospital: excruciating, cutting, burning pain on bowels moving. (frequently)
Steps taken: Ceased hospital abx Tues 11th pm - no change
Wednes 12MD: took milk thistle - effect seemed to be an increase in bowel action, and pain no less. > took immodium + 1 Benicar. > no further action to date.
Diaphragmic/Gall area discomfort: has increased to uncomfortable but tolerable. I may be able to tolerate more than I 'should'? I am considering whether I need to begin mino dosing to suppress this symptom/inflammation/?infection.
Feet: are highly pufft as a sign of the high level of immunpathology continuing. Some wrinkling showing this morning. I will watch this.
weakness: yesterday, as well as the imunopathology, muscle soreness/ugh started to come thru as the effects of the more mobility surfaced. Resting a lot, as required. Still difficult to move in bed. Have to learn to turn onto R side yet.
I am now more able to lift myself from a sitting position on a lower(normal height) chair to upright/standing than I was.
walking: Only as I have to, I am able to walk carefully and slowly (and awkwardly) around the unit from furniture to furniture or holding Pat's arm. ie without the hospital 4 wheel rollator/walker.
Plan: to explore further managing the immunopathology, and to continue to mobilise as able, and rest as required.
Diet: I am finding I am only able to eat small amounts.
L Leg in particular goes to sleep when sitting on my computer chair.
Thank You All.. AB..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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marion villa
Member in Phase 3
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Posted: Thu Dec 13th, 2007 22:22 |
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Soooo glad you are better and at your Home!!!
cheers from mexico:
Barb, Barb rah rah raah!!!
marion
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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Millie
Member in Phase 2
| Joined: | Mon Jan 15th, 2007 |
| Location: | Afton, New York USA |
| Posts: | 169 |
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Posted: Thu Dec 13th, 2007 23:36 |
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Barb,
So Glad to see you are home. You have been in my thoughts and prayers. Rest and continue to get better. You were missed.
Millie
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sarcoidosis/pulmonary, muscles, HTN, MVP, PHTN, Hx GI obstruction, melonoma, Ph1,1/07, MPh2 3/07, Ph2 9/07. verapamil, lisinopril, probiotics, vicodin/motrin,NoIRS D25-5 3/07,7/08-VitD-11, D2-4,D3-11.
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