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Deb Grabetz
Member in Phase 3
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Posted: Tue May 26th, 2009 23:24 |
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Hello!
It has been a month since I last posted in this Alumni group and just a few updates to report!
Probably my most exciting news came from my docs office today, with the latest update on my CRP. (C-Reactive Protein) which was run for cardiac inflammation. When I was first tested when I became ill, December '06 my CRP was off the charts. This was when I was sent to a cardiologist for a heart cath. Only to find that my arteries at that time were 100% clear. So I remember now, being sent on my merry way, with my CRP at a 9.1.
Approximately 10 months ago this was tested again after being on the MP for a year and it had come down to 7.4. Anything within a range of 3-10 is considered high cardiac risk. I am very happy to say that although my CRP is still in the high range, as of my most recent test two weeks ago it is at 5.49. No matter how I look at it this is a huge improvement from the 9.1 that I started with. I remember back in '06 going into the ER and the doc there telling me he felt I had something going on with my heart. I just chuckled until he gave me some nitro and wow, what relief. Interestingly, I was sent home with the nitro pills and not much else. Even with my sarcoid diagnosis, I'm not sure anyone made the connection with what was going on with my heart.
It's good to see these numbers coming down. Slow and steady...but they are surely coming down. At this rate I will be out of the high cardiac risk range in another year.
Well, back to the MP reporting. I am within baby steps of getting to Level IV--Phase II. It has really been a struggle for me to get through this last ramp but I can tell that I'm very close, finally! I was hoping to be to Level IV two months ago and just kept toggling my doses back and forth to stay comfortable. Excited to get there...
Take care all...you are each in my thoughts for good health!
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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JanEE
Member in Phase 3
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Posted: Tue May 26th, 2009 23:33 |
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Hi Deb,
This is really wonderful news. You are doing so well these days. Truly inspirational. I'm so happy for all your progress. After all your hard work it's great to see, and feel, it paying off.
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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expate
Member in Phase 3
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Posted: Wed May 27th, 2009 01:05 |
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OK, why is my reply always a "ditto" to Jan's? She beats me to it every time. 
A most hearty congrats to your hard work paying off in better health.
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed May 27th, 2009 01:25 |
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CRP is expressed with one of the body's antimicrobials. It is normal for it to be present with Th1 inflammation in any organ, although a cardiologist will try to tell you (based purely on pseudo-science) that CRP is specifically associated with cardiac function. It is not. It is asociated with the microbiota species mix.
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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
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Posted: Wed May 27th, 2009 01:27 |
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Congrats Deb!!
This is just great news!! Thanks for sharing those wonderful results and here's to another year of MP bringing those numbers down further and most importantly, that you continue your path to recovery and better overall health!
Michele
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RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
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Deb Grabetz
Member in Phase 3
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Posted: Wed May 27th, 2009 02:08 |
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Thank you Ladies....you sure know how to cheer a gal on...and on...and on!
So....Dr. Marshall, I'm guessing that this is a good thing that my numbers are coming down??? No matter what, those high numbers are scary, scary especially since I was having so many cardiac related symptoms! My doc who treats me with the MP, said that he was running this CRP specific to cardio. Does that make sense to you??
To be honest when I was sent to the cardiologist..before my Sarc diagnosis...once he saw my clear arteries he sort of washed his hands of me and sent me on my way. Doesn't that sound familiar?!
Last edited on Wed May 27th, 2009 02:12 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Deb Grabetz
Member in Phase 3
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Posted: Sun Jun 14th, 2009 16:14 |
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Just a brief update! Next month will be two full years on the MP without a break! Mentioning that "without a break" because I have so been tempted to take a break at times, yet felt for myself I had better stick with it. I've added a third abx now which puts me into what would be considered Phase III. Got myself stuck into a neuro period where I felt like I needed to switch things around.
Physical IP has really slowed up even when on high doses in Level II. Yet ENT IP like itching ears, sinus drainage continues at steady pace. Clearing chest, coughing continues also.
Since adding third abx have not seen a lot of change. Do believe that my fatigue has lessened by dropping back on high levels of the abx.
So far so good...
My plan is to get back to walking. It seems that last fall when I started walking my overall well being was good. I'm guessing that the activity helps ease some of the arthritic type aggravation that my sarcoid can cause.
Bee well! Believe that there is light at the end of this very long tunnel...for it really does exist!
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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BARNEY
Moderator
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Posted: Sun Jun 14th, 2009 18:28 |
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Deb,
"It is not about the abx, IT IS ALL ABOUT THE BENICAR" a quote from Dr Trevor Marshall.
You might try Benicar 40mg/4hrs.........you will still have IPs (only milder) which might need settled by 20mg Benicar sl...........IF you do not like it, then you may choose to go back to the abx.
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals), 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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Deb Grabetz
Member in Phase 3
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Posted: Mon Jun 15th, 2009 00:13 |
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Heh Barney,
Thanks for the note. Benicar is now bringing on more IP for me????
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Deb Grabetz
Member in Phase 3
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Posted: Fri Jul 24th, 2009 13:29 |
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July marks my 2nd year anniversary on the MP! It also marks many significant changes in my health since becoming ill in the fall of 2006. For one I was able to return to work after two years! A huge accomplishment for me Being bedridden for months, unable to stand for months didn't seem to leave much hope in ever returning to work....and yet it happened! I take a walk every night now, it helps with my energy. Yet, I remember a time, months ago, when I barely got out my front door and had to turn around, I was too weak to walk! My bloodwork has improved-- D-0, (from 12) D,1-25 18 (from 54) Sed Rate fluctuates is 25 (from 42) CRP-cardiac-- is 5.49 (from 9.1!) It is quite obvious that I am here and doing well because of the MP!
This week in my progress report, I posted most recent symptoms from my abx increase, they were all mild. Mild flank pain, aching calves, parathesia in hands, rib pain. Below I've listed what "i looked like" two years ago. It's hard to believe now that was "me". I have so much to be grateful for this morning as I write my MP anniversary post and will be forever grateful to Dr. Trevor Marshall, and to those who worked so hard before me to get well and prove that there is hope to cure chronic illness. Today I smile...for all of us!
Note: The following posts are from two years ago:
* Tightness in chest; bronchial area *No change but less pressure. Still have trouble wearing a bra; too much pressure.
* Mid back pain *Mid back pain has worsened
*Hoarseness continues. Voice barely audible at times. Burning sensation in chest.
* Wooziness; like my head was mildly swimming...with prominent ringing in ears. Feel a bit like a bobble head, if that's a good description of this...or like I'm swaying on a boat..
*Fatigue kicked in a bit heavier the first hour after taking. *Fatigue has worsened.
*Coughing most of the day (haven't coughed in a couple of months);productive.
*Couging a bit more productive than usual. Coughing up teaspoonfuls phleghm.
*Pressure in my waist area, increased flank pain *Comes and goes...
*Left ear itching
*Activity in my right ear;drainage, pain,plugged.
*Tummy activity
*Leg pain
*Neck pain *Mild neck pain returned
*Shoulder pain
*Sore throat
*Heel/ankle/leg pain
*Increased heart beat;cardiac symptoms.
*Burping-
*Runny nose
*Leg weakness *A bit worse seems to tie in with my back pain and fatigue.
*Body stiffness *Definitely noticed an increase in all over stiffness;we are also having some heavy thunderstorms here and question the connection. Flu-like symptoms.
*Nosebleeds subsided after five days
*Unable to stand for any length of time. Taking a shower pretty much wipes me out.
*Sun/light exposure causes fatigue.
Last edited on Fri Jul 24th, 2009 13:52 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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boggs1018
Member in Phase 3
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Posted: Fri Jul 24th, 2009 13:40 |
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Woohoo! So much to be grateful for. Congratulations!
Juli
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Dx 5/01 Sarc Skin; 5/07 No foods with D, Using NoIRs 2% outside, 10% at computer/tv; sun: 15 min. to/from work, no lights at work, windows in office; Ph1 6/07; Mod. Ph2 8/07; Ph2 3/08; Ph3 7/21/08 25D-9.5 5/27/09
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Carole
Board Staff
| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
| Posts: | 676 |
| Status: |
Offline
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Posted: Fri Jul 24th, 2009 17:29 |
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| CONGRATULATIONS and HAPPY ANNIVERSARY, Deb! Perseverance pays, and we celebrate with you! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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Deedee
Member in Phase 2
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Posted: Fri Jul 24th, 2009 23:31 |
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| Deb, thank you for continuing to share your success story, as an inspiration to all of us who are walking in your footsteps. Deedee
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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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Pipistrelle
Member in Phase 2
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Posted: Sat Jul 25th, 2009 18:56 |
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Happy MP Anniversary Deb, it's so great so see your progress - and all the best for your continuing journey to full health.
Morag xxx
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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BARNEY
Moderator
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Posted: Sat Jul 25th, 2009 20:36 |
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Hey Deb,
Great report!!!!
HAPPY ANNIVERSARY!!!!!
Karna’s thoughts: Sometimes I just need reminding that it's not about winning the race, it's about just crossing that finish line.
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
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
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Posted: Tue Jul 28th, 2009 03:01 |
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Hey Deb!
Congrats!!! You are an inspiration to so many including myself!
Way to go!
Michele
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RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 361 |
| Status: |
Offline
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Posted: Fri Jul 31st, 2009 07:35 |
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A fantastic Look down memory lane Deb and at the improvements MP can bring. Keep moving in the right direction, I am so very pleased for you,
Take care, 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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Deb Grabetz
Member in Phase 3
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Posted: Sat Aug 1st, 2009 16:36 |
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Many thanks for all of the responses to my anniversary update and thread. It is a wonderful feeling to be here and at this point on the MP. Know that I am rooting for each one of us on this journey...the IP continues yet the healing is evident!
Beyond getting well, I think I am most of all grateful, thankful endlessly each and every day for the support that has been shown here on site to me and so many others. It is doubtful I could have managed all of this without each one of you!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Deb Grabetz
Member in Phase 3
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Posted: Tue Oct 27th, 2009 12:26 |
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Wow, how quickly the time passes, it has been three months already since I last posted my alumni progress!!
Things are great...continue to be slow with my ramping but within the last few weeks I have felt better than ever. Some minor disturbances like the back muscle pain, some mild chest pressure but my energy, stamina and most of all ambition have really rebounded lately. No words to explain how this feels!!! Being such a busy person, losing those three things for so long is an emotional drain as we all know. It has been a bit of fresh air to feel so good waking up!
Three years ago this month is when I started feeling unwell...and by November '06,things went downhill fast. Looking back now I realize I was feeling the chest pressure, could see the inflammation in my swollen face, was retaining fluid along with the fatigue and brain fog kicking in. At that time I had not even heard of Sarcoidosis...boy, was I in for a shock after being told, it was "just sarcoidosis". "Just"is a word that was not created to be used with Sarcoidosis!
So in praise and thanks to Dr. Marshall and the MP and the heavens above, I have gone from being completely bedridden for over a year to working part-time flying and doing many of the things I was doing before this sarc flare. It has taken me three years to gain some stability, it has been a long journey but one that was well worth the committment. Without the MP, it is hard to say what life would be like for me today...it is safe to say that without the MP, there would very little quality of life and having experienced this three years ago, I am so very greatful for all that has been given to me.
May each of us be blessed daily by Dr. M's work...and may we continue to heal with each passing day! Thank you Trevor!
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Deb Grabetz
Member in Phase 3
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Posted: Thu Feb 25th, 2010 13:33 |
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It has been four months already since my last post in the Alumni Forum! Haha that sounds like a good old Catholic confession!
I went through a great stretch of energy, where I was waking up every day feeling ambitious and steady. The only time that this seems to disrupt itself is when I increase my abx-- which I must say is getting easier and easier for me. In fact, as of late I took a big jump in mg because I felt I could and of course, it hit me a bit with fatigue but nothing and I repeat nothing as compared to a year ago or longer... So, I've learned once again not to try anything to big with these increases and take it slow... 
We bought a wii since I've started exercising more and I've been able to do up to an hour almost every day without too much difficulty. It seems to help my tight muscles as long as I stretch before and after...(well, that's what we're supposed to do anyway). The nice thing with the wii is there are low impact games and stretches on there that can be done in case I'm feeling more tired than usual. Tried a yoga position and then realized just how out of shape I am...I looked at the position and thought, "now how am I going to get my foot that high"??
Currently, I am still plugging along in Phase II but have added a third abx off and on to my current plan and managed it ok. It is just good to be living life again. Probably my two biggest issues are light sensitivity and the occasional flat brain where my ambition takes a dive. But I am able to connect the lack of ambition to the abx increases, so this is more manageable.
We have our first wedding this June, our youngest daughter is getting married. It is unbelievable that I am participating in all of the planning as compared to where I was this time three years ago...THREE YEARS AGO I WAS FLAT ON MY BACK IN BED!! With no hope...until I started the MP!
I have come so far in the last 2.5 years! Thank you Dr. M!
p.s. One thing I forgot to mention...for the last couple of years on the MP, increasing Benicar as is recommended to help with IP has always caused my IP to worsen. Frustrating to say the least because the Benicar is a great tool to help with IP...in the last couple of months, something has changed for me, where the increased Benicar helps settle things...I am so grateful!!!!
Last edited on Thu Feb 25th, 2010 13:46 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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