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scooker48
Member in Phase 3
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Posted: Thu Sep 27th, 2007 19:20 |
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Vicki,
The MP is amont the best things I've EVER done for myself. Maybe even more important than going to college. It is always uncomfortable at first, but with time diminishes. We have a strong community here, and can often explain the bumps in the road. I promise you, the bumpy times do not last.
Sherry
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 04/07/08 D25 <7.0 L, Liver function normal 3/07; Wear NoIRs outside & for computer screen time. No K creme used.
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BARNEY
Member in Phase 3
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Posted: Fri Sep 28th, 2007 02:28 |
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Vicki,
Sherry is right. Marshall Protocol is the most important thing that you will ever do in your life. You are doing it for you and you deserve to be well.
I have tried all kinds of medicine, nothing worked until MP.
I am here to tell you that it will not be easy. It will be hard and you should not stop the Benicar for any reason. I have never stopped taking the Benicar....it stops the bugs in their tracks and the abx kills them dead.
Now, do you want to believe that internist or do you want be believe 'living proof'.....namely, me and all the other MPers who are getting well.
How much Benicar are you taking? Maybe you are not getting enough Benicar....I did not have a lot of herx just from Benicar, but some people report a lot of herx from Benicar.
This is my advice to you: Sit down and have a quiet talk with your self. Tell your self that you can do this and in the meantime when you need someone to help hold you up...just write me or any other MPer because we all try to help each other. We also have PM's (private messages') if you are too embarassed to ask a question on a post....or if you just want to talk. If you do not know how to access this, let me know and I will explain.
Take good care of you and don't let anyone tell you this will not work..............IT DOES.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
Last edited on Fri Sep 28th, 2007 02:32 by BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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Mary21
Member in Phase 2
| Joined: | Sun Aug 26th, 2007 |
| Location: | USA |
| Posts: | 113 |
| Status: |
Offline
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Posted: Fri Sep 28th, 2007 02:35 |
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| Thanks Barney! I am in it for the longrun. Some days are just a bit harder than others! I truly appreciate the pep talk. I am still on Benicar 3X day with an intent of starting the mino on Oct 8th. I will be in touch.
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RA, Sjogrens/Ph 1 1/7/07/Ph 2 12/4/07/,calcium & mag, Noirs 2%, 25-D-28.4. I-25-47.5
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BARNEY
Member in Phase 3
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Posted: Fri Sep 28th, 2007 02:41 |
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Vicki,
You should be taking 4 Benicar per day for a total of 160mg.
I even take some 20mg extra for headaches, pain, and even for nausea. It is what I consider a 'miracle' med.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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BARNEY
Member in Phase 3
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Posted: Sun Oct 14th, 2007 14:16 |
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DAY 1015 (CAN YOU BELIEVE THIS), 10/14/07, BENICAR ONLY @3HRS PLUS ANY EXTRA AS NEED, VERY LITTLE USE OF PAIN PILLS OR TYLENOL, NO ABX SINCE 9/15/07
MP is the best thing of my life.
MCS is so under control it is great...do not like the smell of some perfumes and cigarette smoke is still nasty but mcs is almost non-existant and absolutely no asthma attacks from the mcs anymore at all.
eyes.....I have never seen the tv as plainly....no eye pain.......colors are even so very beautiful.
head....very little achey head any more....still a little problem with 'craddle cap' (like a dry scalp collection) but only a few spots....not the entire head.
nerve endings.....no more bugs crawling.
stress....not completely under control but better than before. Amanda (my dog) was bitten repeatedly by a rattlesnake she encountered in our front lot...she would not back off and is now paying the price....her face, jaws, neck, chin and mouth are so swollen that I have to purree her food for her to eat...she cannot open her mouth very far....really worried about her age (12 1/2)...but she seems to be doing better each day....BUT....it has taken a toll on my nerves....even in the house I have a 'fear' of turning around and seeing a snake in the house now. I constantly walk around the house keeping my eyes peeled....would really like to see that calm down. (I hate snakes)....but I saw her being attacked and grabbed a shovel and as the snake was trying to strike at me....I chopped that sucker's head off....Amanda tore the back 1/3 of the snake off...so I had to go searching for the tail to make sure it is a rattler (6+ buttons)...that did not help my stress level because I remember the old saying....'where there is 1, there is usually 2'. Thank God I did not see another one. BUT....it will be a while before my nerves calm down from that experience....extra Benicar also helps.
ears....no more crackling or having to 'stratch' inside them.
feet....are not hurting as bad, next to no pain and they seem to be smaller...I cannot wear some of my shoes....they seem to big and do not want to stay on.
knees/hips......still some problems with them but nothing like I have had in the past....actually able to walk quite a bit (even on cement) without pain until I have really spent time shopping....can also sit quite a while before the hip pain kicks in.
back.......had some slight back pain that reminded me of the good old days when the back pain never quit.
shoulder...had some slight reminders of the osteo pain in shoulders but as with other areas...it is ever so shortlasting.
neck...same as shoulders.
no abx....no brain fog.
I go to bed most nights no later than midnight....insomnia is not near as bad.
In general....I feel like I have most of my life back...but I still know that there is a lot more healing coming.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
Last edited on Sun Oct 14th, 2007 14:18 by BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 1903 |
| Status: |
Offline
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Posted: Sun Oct 14th, 2007 17:24 |
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Thank you for posting such an uplifting report Barney!
So good to hear you are doing so well...you deserve it. You have persevered through so much and now can look back and relish those wonderful benefits even more.
Sorry to hear about your snake episode, not my favorite thing either. My daughter had a pet Boa when growing up and I never could warm up to it. (threatened many times to microwave it )
Continue to take good care of you Barney and thanks for checking in with us. You are sure an inspiration!
Warm Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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LeAnne
Member in Phase 3
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Posted: Wed Oct 17th, 2007 03:43 |
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Hello, Barney. Glad your doing so well! Miss you.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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BARNEY
Member in Phase 3
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Posted: Tue Nov 6th, 2007 02:25 |
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DAY 1037, 11/5/07, BENICAR 20MG - 3HRS, 40MG - MIDNIGHT, NO ABX SINCE 9/15/07
I am doing great. My immune system seems to be doing bug killing just fine with the assistance of the Benicar. I am very pleased with how it is going. Some light herxing but nothing requiring pain pills.
Mandy (dog) is completed recovered from the rattlesnake attack....I am worn out from taking care of her. I tripped over her blankie and I think I broke my big toe on the right foot but it is healing....but hurts like you know what. Makes walking quite difficult.
I am off to Ohio to see my Dad...he is not doing well.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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Aunt Diana
Advocate
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Posted: Tue Nov 6th, 2007 03:05 |
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| That's great news, Barney. I was wondering where you were.....you were living LIFE!! Halleluja!!
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 520 |
| Status: |
Offline
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Posted: Wed Nov 14th, 2007 00:14 |
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Barney, I'm glad you are doing so well. You have been such an inspiration. I must have missed it in this PR update somewhere...are you taking a quasi MP vacation by stopping your abx or do you believe your IPR will continue on its own without the abx now (that is, you've turned the corner and your immune system is doing most of the work on its own with some help from Benicar)?
Thanks, Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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BARNEY
Member in Phase 3
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Posted: Sun Nov 25th, 2007 19:01 |
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DAY 1057, 11/25/07, BENICAR 20MGQ3HRS, 40MGMIDNIGHT, NO ABX SINCE 8/15/07
Thank you for all your coments....I am sorry I have not posted sooner but it seems like everything is happening to tie me up.
Having minor herxes like: heel feels like someone drove a steel rod up thru it, had some minor heart arythmias, dizziness when I lean head back to look into cupboards above my head, a little 'drunken' walking (vertigo). All of these have been minor...just a few comings and goings. Had all of these symptoms prior to MP....these are much lighter.
My immune system and the Benicar seem to be doing a fine job for me.
I still wear long sleeves, long pants, a hat, shoes & socks, and my Noirs. My windows now are mostly covered either by mini blinds and/or solar curtains thus giving me some 'light' light exposure. I still do not just go outside in the sun to be going out...just when I need tooo.
I have had to use next to no pain meds or tylenol...what a blessing!!
Having a terrible time with water leaks in plumbing...that has been really tying me up, looking after Granny and going monthly on a plane to see my ailing Dad and going to Albq to see my Coast Guard grandson who came in for Thanksgiving. Going to Ohio again for Christmas at my Dad's 'begging'....and since he now has a mass in his stomach (and he is not a candidate for a biopsy or surgery....I will go as often as I can. Airports really wear me out....but I feel I must go despite my own health.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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BARNEY
Member in Phase 3
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Posted: Tue Dec 11th, 2007 04:48 |
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DAY 1072, BENICAR 20MG q 3 HRS AND 40MG MIDNIGHT, NO ABX SINCE 9/15/07
I am doing well as I go about a somewhat normal life. Coming/going as needed to do everything needed to run a household. Still wearing Noirs and continue covering up with levis, long sleeve shirt, hat socks/shoes.
At the insistance of my primary care doc....went to eye doc today and got wonderful news.....NO signs of diabetes or sarcoidosis in my eyes.
I will be leaving next Monday to spend Christmas in Ohio with my Dad...so here we go thru the airport thing again which totally wears me out....the old 'hurry up and wait' and worst of all, I change planes in Chicago.
Hope everyone has a wonderful Christmas and a Happy New Year and continues to heal as I have and as I continue to do.
HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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BARNEY
Member in Phase 3
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Posted: Thu Jan 3rd, 2008 00:43 |
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DAY 1095, 1/2/08 BENICAR 20MG/3HRS, 40MG/MIDNIGHT, STOPPED ALL ABX 9/15/07
Surprise everybody......I am still alive and kicking (lol) even tho I have not posted for a while.
I have been having quite a time...no I am not on a abx break...I believe my own immune system is trying to kill the bugs and I think it is in for the fight of it's life. I have been having lots of herxes.....anything from back, hip, shoulder and neck and leg pain to sob (which has been with that miserable cough that goes along with it). I feel like I am getting thru it with the help of extra Benicar and 20mg Zyrtec. The sinuses are draining down my throat like crazy.
I went and bought Mucinex (as suggested) but ended up with a mouth and tongue full of blisters....so I stopped that and started the Zyrtec.
I also have a UTI and am taking double strength B for that for 7 days.
Went to Ohio to spend Christmas with my Dad....he is aging fast....but we were able to have a good time...going out to eat instead of the institutional food at the Assisted Living he is in. The flight home took me almost 24hrs due to snow closing the Chicago airport (seems as tho all planes either fly out of or fly into Chicago). Collapsed in bed as soon as I got home.
Have a sweet guy in my life and he is so supportive of my MP treatment...I feel really blessed. He is learning a lot since he has never been around anyone with so many dull gone medical problems...but he is hanging in there, asking questions and learning.
Light exposure has been a little more than it was (i.e. going out (but fully covered) and a little more light allowed in my home.
PS Yesterday was my 3rd anniversary on MP. I am so thankful to you Trevor for the MP and all those who help us get thru.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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BARNEY
Member in Phase 3
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Posted: Fri Feb 1st, 2008 12:01 |
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DAY 1125, BENICAR ONLY 40MG/4HRS, NO ABX SINCE 9/07
Light exposure....everyday when I go out to feed my dog (2 x) and if I walk over to Granny's to help her. I am wearing a baseball cap so getting some light exposure on face skin...do not use any creams/makeup. I do not dwell outside, mostly just long enough to get to where I am going.
Coverage....I am still fully covered and wearing Noirs (except face is exposed for short periods).
Gee, I did not realize it had been so long since I posted.
I am doing very well, the only herx I am having (that I realize), is still the lower back, hips and r leg. Bearable, more of a nuisance.
Everyone here is having dry eyes so I figure it is our dryness in the air, not a herx (I believe).
I am very pleased with how the MP is doing and my new guy friend is very supportive of my MP and always makes sure I have taken my Benicar. He is just in awe of how I am doing so well after being so very ill.
I have instructed my caregivers, family and friends to not ever take me/admit me to a hospital...we will deal with everything that happens AT HOME.
HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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Lee
Member in Phase 3
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Posted: Fri Feb 1st, 2008 13:16 |
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| I like that idea Barney ....about the hospital. I too have mentioned it to family BUT now I think I may enforce it in writing. Maybe we should call it "Barney's Law"!! Take Care and Keep getting Better and Better!! Lee & Hubby
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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BARNEY
Member in Phase 3
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Posted: Thu Mar 6th, 2008 01:02 |
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Just got back from Ohio visiting my Dad in his nursing home, his demensia doubled and he ran me ragged.
I am in trouble with a bug I picked up there....mucus is looking like it is going into infection(starting to turn yellow). Am not going to hospital under any circumstances...so what are suggestions of a safe antibiotic on MP. I am currently on only Benicar 40mg@4hrs and no abx. Coughing violently, sinus drainage is unblieveable. I have used my abuterol to help, dayquil/nightquil, tylenol, cough drops and I am absolutely miserable.
Would any of the antibiotics I take be acceptable for me to take and in what amts?
HANG IN THERE, WE WILL MAKE IT!!!! BARNEY
PM sent
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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BARNEY
Member in Phase 3
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Posted: Tue Mar 11th, 2008 01:23 |
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DAY 1163 on MP, 40mg every 4 hrs, no abx since 9/07, extra Benicar 20mg PRN
Life is so much better since MP, except for that lousy bad cold I got while at my Dad's nursing home in Ohio....I did not get a lot of light exposure cause Dad was not able to leave the home this time and it snowed or iced every other day while I was there and I do not drive on ice or snow (long story).
I did a lot of walking because it was quite a walk from the halls of Assisted Living to the Nursing Home where Dad is now confined due to worsening health. All the halls are enclosed and heated.
Dad kept me hopping this time, more than last time...so I was totally worn out and more susepticable to coming down with a cold or flu. I don't think I will be able to go next time (3 flights in 4 months)....it is really taking a toll on me and stress (seeing him declining) is getting to be really hard on me even tho I have totally increased tremendously in every way with the MP.
Cold is much better, but Ben made me stay in bed and rest for several days, Benicar, cold meds, and Meg's advice helped a lot.
Thank you Trevor, Meg and all who help hold this site together for all you do to help us.
HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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BARNEY
Member in Phase 3
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Posted: Wed Mar 12th, 2008 02:06 |
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DAY 1164, 40mg Benicar every 4 hrs, plus 20mg PRN, no abx since 9/07.
Well...I think I blew it today.
Sun Exposure: Excessive as I sat in Ray's (feeds my dog when I am gone) driveway with Granny in truck and talked about the pain in the left side of his head (after a root canal). I sat there and should have realized how bad I would react after how hot the sun was feeling on my clothes and I am sure it was on the left side of my face even tho I had a 'ball' cap....but no brim on that side.
Tiredness: I just totally lost any energy within 2 hrs of sitting in the truck and had to return Granny home, before I totally lost all energy. Went to Ben's and crashed....scared him real bad. I admitted to the fact that I may have rushed getting back into the flow of things and being so light exposed. I slept all the rest of the day until I finally 'came back to life'. Still tooooo tired to get up and do anything except put this post on.
To me this is not all that scarey, but to a loved one, not used to seeing us like this, it is really scarey. He has cancelled plans to go to work tomorrow because he thinks I need to be 'looked after'. I have gone thru days like this lots of time but I would like to think that I have learned something from them.
Took extra (20mg) Benicar when I arrived at Ben's and a pain pill/500mg Tylenol after sleeping for a few hours and was able to think more clearly. Good old Benicar always comes to the aid but sometimes I cannot think clearly enough to do it sooner. Good old sun still knocks me for a loop when too much exposure.
Okay....so back to resting more an less exposure to the sun....I've learned my lesson this time.
Don't panic MP patients....I am still dealing with this cold and did something stupid by sitting in the sun for more than 20 minutes.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
Last edited on Wed Mar 12th, 2008 02:10 by BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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BARNEY
Member in Phase 3
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Posted: Thu Mar 20th, 2008 03:03 |
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DAY 1172, 3/19/08, 40mg Benicar every 4hrs, 20mg Benicar PRN, no abx since 9/2007
Light exposure: limited...I go out but not sitting directly in sun like the last time I posted.....scared Ben so bad I promised him I would not do that again. I also pull my hood (levi jacket with lighthouses embroderied on it) up over my hat to keep sun off my face.
Still controlling Vit D (food) intake....oh how I would love to have deviled eggs in my life again but I know better than to try an egg yolk.
About time for me to see my doc again and she will not be happy with my sugar readings....they are still high....I am not good about staying on low carb like I should but I am trying to some degree.
I am almost over cold....a lot better...but still having some coughing jags...less each day.
I have always had to be careful of the bath tissue I use (burned my private area) but the one I was okay with has now started using 75% recycled products and I am back to searching for a new one. Maybe this is to much information, but feel all is important.
All else seems okay, except for stress level with things with family...dad is a lot worse...and brother called tonight with additional problems for him and it is a real mix of emotional feelings. We are losing him to Alzemhizers (sp?). That is a very sad feeling.
HANG IN THERE, WE WILL MAKE IT!!!! BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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