 |
| Author | Post |
|---|
Deb Grabetz
Member in Phase 3
|
Posted: Sun Nov 16th, 2008 19:00 |
|
Hello All!
As I reported in my weekly PR, I just celebrated the best birthday I have had in over two years!!! ...and on top of that it snowed on my birthday...I LOVE snow, call me crazy???...Must be a sign of good things continuing!   
Something very noticeable as of late for me, is that I'm ramping much easier than I was in the beginning of Phase II. See my timeline below:
Phase II Level 1 Began 3/2/08
Phase II Completed Level 1 6/29/08 Approx 150 days for Level 1.
Phase II Level 2 Began 7/6/08
Phase II Complete Level 2 10/12/08 Approx 95 days for Level 2.
Phase II Level 3 Began 10/19/08
*Currently at beginning of halfway mark of Level 3 Approx 28 days!
*Would also like to note that with the ramping in Level 3, my IP is much more limited to Neuro symptoms and flank pain as compared to the 20+ symptoms that would normally occur with each ramp!
Good stuff!!!!!!!!!!!!
Last edited on Sun Nov 16th, 2008 20:44 by Deb Grabetz
____________________
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
|
Deb Grabetz
Member in Phase 3
|
Posted: Mon Dec 29th, 2008 12:38 |
|
Hello All!
First, I would like to wish a Happy and HEALTHY New Year to each and every one of us! What a blessing we have all received with the Marshall Protocol!
It has been six weeks since I've updated here but have been quite the busy one! Thank you Dr. Marshall for this! My contract with the airlines was expiring at the end of November, so my doc and I decided to give going back a shot! I spent three very stressful weeks back in training, some with long days both in class and at the hangar getting re-qualified. I did catch a cold that most of the class had but for the first time in many, many years it just went away without attacking my chest, which was the usual! Bravo for the MP!! No other explanation but my progress on the MP for this one!
I flew all day on Christmas Eve with a supervisor to finish up my qualifications to return as a flight attendant. I left home around 7:30a.m. and my husband picked me up at 9:30p.m. at the airport...Awesome! I was tired but a normal tired that anyone putting in that kind of a day would experience. When I look back at my first alumni posts and the fact that two years ago I could barely get off of the couch I was in such excruciating pain with chest pressure, weakness and debilitating fatigue it goes without saying the progress I am making on the MP has been a gift beyond words!
On Christmas morning my 30 year old son announced to our family that the best gift he could have received this Christmas was to see me getting well again! My daughter got me the cutest visor that is printed with "Stop Sarcoidosis" on it...perfect for shading my eyes during outings!
My energy and ambition returning is so extremely noticeable. It feels so wonderful not to be dragging around like a drowned rat...and that is putting it mildly. I am very committed to probably another good year or so on the MP as I'm close to 3/4 through Phase II and continue with mild IP as of late-- muscle aching with my last abx dosing but at this point I am managing life again while doing the protocol. Quite an improvement from being bedridden for months!!!!!!
I wish you all continued wellness...but it will only come with complete dedication and persistence on the MP! I received a great email this morning and it was about frogs climbing a big mountain...one frog after another dropped, except this one little frog who kept persevering to the top...The moral of the story was that this little frog was DEAF...and he made it to the top because he could not hear all the negativity around him, telling him that he couldn't do it! He just believed that he was going to get to the top of that mountain.........
AND HE DID!!!!
Happy New Year and May God Bless each of you! Deb
____________________
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
|
Deb Grabetz
Member in Phase 3
|
Posted: Mon Jan 19th, 2009 12:30 |
|
Update since my last post in December!
It seems for me personally, that I notice my improvements, month to month. When I look back even three months ago, I see that I'm not struggling quite as much. Although I'm the type of person who is always looking "ahead", it has helped me so much to go back at times and check previous posts to see where I have been over the last two years. This really helps me to appreciate where I am at this moment!
I have been back to work now for a month and realizing the progress that I've made on the MP. My main concern before returning to work was how my body would handle the flying in relation to energy levels. Flying as you know, can be a drain physically on a "well" person. Between the jet lag and long hours on our feet. But I realize now that I'm doing better than I was four years ago, even before I was dx'd with my Sarc. I tire less easily.
I find that fatigue is a good symptom to track because it is one of the more obvious and measureable of symptoms. There were many times I would feel exhausted after one flight and now I do not notice this "normal fatigue" until after four flights. Four flights in one day is a lot for anyone! Being able to accomplish this still has me pinching myself...after being unable to stand for more than 10 minutes at a time without weakening and needing to lie down.... I am continually in awe of this protocol! 
As far as my working schedule goes, since I carry a high seniority I am able to manipulate my work days so that I typically only do three flights per day and have longer rest periods than if I were a newbie on the line. My first day back home, I do some odds and ends around the house but typically just rest, even if I'm feeling like running around doing errands. Since I am still in Phase II, I know my body is still working hard and I want to avoid any setbacks! My motto has changed from "doing it all" and "Superwoman" to taking care of Deb first...should have adopted that motto long ago!
A few weeks ago I had a tooth break off and had some work done last week by the dentist. I lean to the cautious side now when having anything done at all outside of the MP. All went well, I followed the MP suggestions with my dentist. I printed the following information months ago and my dentist keeps this on file with my records. Why do I need to ask for a local anesthetic without epinephrine?
If there is any one thing that I can pass along from having followed this protocol now for over 21 months...it is to do your darn best to keep your moral up, never become discouraged and believe in what you are doing for your health. I had days that I would never wish to relive after becoming ill....complete loss of energy and ambition....cognitive difficulties....physical symptoms, many relating to less functioning organs....and yet here I am moving forward from month to month. It gave me so much hope when I started the MP to see others getting well. The MP was my ONLY hope!
Many blessings to each and every one of you! Deb
____________________
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
|
BARNEY
Moderator
|
Posted: Mon Jan 19th, 2009 14:53 |
|
Deb,
It takes time....but it is very worth it.
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,
|
expate
Member in Phase 3
|
Posted: Mon Jan 19th, 2009 16:14 |
|
Good to hear from you, Deb, and that you are doing so well.
I have to say I thought of you with the news of the Miracle on the Hudson.
 dette
____________________
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.
|
Deb Grabetz
Member in Phase 3
|
Posted: Mon Jan 19th, 2009 16:24 |
|
Yes Barney you are SO right, very worth it! For so many years how many of us were dealing with an illness that we had no control over??? For many of us had no clue why all the underlying health issues??? Here we are recovering!!!
Odette, wasn't that something? I was due to fly into LaGuardian two days after the Hudson River incident with my crew and we had a mechanical and were unable to take the flight. It was strange thinking about flying over that plane in the river---It is something we get completely accustomed to though and most of the time when I'm working I forget I'm even in the air! Funny thing how that works!
____________________
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
|
Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Wed Jan 21st, 2009 02:35 |
|
Deb,
I'm so glad to see your post after being back to work for a month! Hurray for you! I'm also glad you were not part of the La Guardia incident. I sure thought of you that day!!!! Living by routine, eh? It's good you've got your "groove" back! Way to go!
Michele
____________________
RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Deb Grabetz
Member in Phase 3
|
Posted: Wed Jan 21st, 2009 02:43 |
|
| Heh Michele...good to hear from you...Thanks for thinking of me for sure...It's those good thoughts that keep us all safe...and getting well!
____________________
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
|
JanEE
Member in Phase 3
|
Posted: Wed Jan 21st, 2009 21:31 |
|
Deb, I FEEL YOUR JOY!!! It is so wonderful to hear how well you're feeling. Keep up the great work.
I'm also glad that you weren't involved in that plane incident, and so thankful that everyone who was made it out okay.
Jan
____________________
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
|
BARNEY
Moderator
|
Posted: Wed Jan 21st, 2009 22:21 |
|
Deb,
So glad you were not on the plane that went down. So glad everyone is okay and what a pilot and crew. Kudos to all of you who put up with us passengers.
I used to think when they would give us all the same instructions on every flight we take....that why listen to the floatation device info...we're not going over the ocean...ha ha....I will listen in the future and I will remember that the back door should not be opened.
HANG IN THERE, WE WILL MAKE YOU!!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
|
Deb Grabetz
Member in Phase 3
|
Posted: Fri Feb 27th, 2009 22:11 |
|
Hello All, (23 months since I started the MP weaning from steroids--20 months on the MP full protocol)...
It has been a month since my last updated Alumni report so thought I would update!
I am almost three-fourths through Phase II. My hope is to be into the last quarter sometime in March. I'm working my rampings around my days off, so it can be a little tricky at times not being caught with serious IP from ramping, but so far so good. I have been back flying now for two months and find my energy levels are good. This last week caught a cold that "everyone" has. It has hung on longer than I would have liked but just trying to rest when possible.
I love the fact that I can walk, walk, walk and then realize the times not so long ago when standing for a few minutes was very challenging! I remember one night in particular, wanting to go for a walk around the block and barely getting out my front door and having to turn around I was so weak! Ah, success with the MP is surely S-W-E-E-T! Just five months ago, my daughter drove me to Louisville to see my Grandma who was very ill--it seemed like a crapshoot then for me to even make the trip--and just last week I flew down and spent a few days with her on my own. I love looking ahead...wondering what it will be like in another five months on this protocol...one thing I know for sure it is the best place I have been in many, many years and I am ever so grateful to Dr. Marshall and all those who have pioneered ahead of me...
I spent over a month reading the MP over and trying to committ to the restrictions that would be required of me. I am thankful every day, that I never gave up in almost two years--for what else was out there for me or for any of us with chronic illness?? The promise of steroids giving me a few good months?? and then what?? the same relapse again and again?? I am especially grateful that I have learned so much about Vitamin D supplementation and fortified D products and how consuming these have such a detrimental affect on chronic illness. This information has been a priceless tool for me, in continuing to get well. With all of the hype that is going on about supplementing with D, it has been an eye opener to learn what it can do to those with chronic illness. On one of the sarcoidosis sites that I frequent and moderate, a member posted that her doctor had suggested 50,000IU of Vitamin D "to see if it would help her chronic illness". I still shudder each time I think of this woman's post---how irresponsible to take something as sarcoidosis so lightly and how we treat it! Fortunately for her, there were many on site who were educated about the harmful effects of Vitamin D and she was alerted.
A healthy month to all of you... Deb
Last edited on Fri Feb 27th, 2009 22:14 by Deb Grabetz
____________________
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
|
BARNEY
Moderator
|
Posted: Fri Feb 27th, 2009 23:06 |
|
You are AWESOME, you go girl!!!!
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,
|
Deb Grabetz
Member in Phase 3
|
Posted: Fri Mar 27th, 2009 15:52 |
|
Well, here we are almost into Spring 2009! It was two years ago this month that I began weaning steroids...not only that but I was barely functioning at this time two years ago! Wow, how time has flown and what a great place I'm at today because of the MP. Each time I post, I feel so thankful, so grateful.
This was from two years ago as I was weaning steroids...I've forgotten what it was like to feel this way as this week alone, I flew a four day trip, came home and entertained the next day for my Bunco club, cooked and cleaned. Unreal!
- Stomach bloating
- Heaviness/strong pressures in chest
- Constipation
- Irratibility high /Intolerable moods
- Fatigue/Unable to do physical activity of any kind
- Mental Fog high
- Strong nausea
- Night sweats
- Flank/Kidney pain
- Photosensitivity
- Sleepless nights
- Ringing in ears
- Sore throat
- Upset stomach episodes/diarrhea (Went from constipation to diarrhea)
- Heart palpitations (BP was at 187/138 prior to starting Benicar)
- Joint pain in knees
- Very dry eyes
3/2009
My last ramp bit me a little harder than I expected and put me a bit behind in reaching my goal of being through Phase II-- Level 3-- but I'm close! Just sticking with the tried and true theory of the MP's
"slow and steady wins the race".
May we all be blessed with steady healing...I keep each of you in my thoughts!
Last edited on Fri Mar 27th, 2009 16:40 by Deb Grabetz
____________________
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
|
BARNEY
Moderator
|
Posted: Sat Mar 28th, 2009 03:25 |
|
Hey Deb,
It is great to see you doing so good. Keep up the great work!!!!
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,
|
Toni D
Moderator
|
Posted: Sat Mar 28th, 2009 15:22 |
|
Deb, I am so glad to hear/read/see all is well with you. Sometimes it's easy to forget where we came from, especially when it's not in front of us all the time . I was happy for you when you went back to work part-time, now full-time.
Continue to be blessed with peace, health and wholeness, my friend.
____________________
DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 25D=26, 1,25D=38| 07/07 25D=<4| BeniQ6H 09/27/05| ModPh2 07/06; Ph2 09/07|Ph3 04/08| 12/08 25D=<4| 05/09 25D=<4, 1,25D=27
|
Deb Grabetz
Member in Phase 3
|
Posted: Wed Apr 29th, 2009 03:51 |
|
Just a quick update! Getting very close to Level IV --Phase II. This has taken me longer than my original goal from a couple months ago but I'm trying not to push myself to intolerable IP.
I'm pinching myself still, but it's a good pinch--that after two years I'm seeing that light at the end of the tunnel that those who were ahead of me on MP, promised me I would see. My IP is pretty much limited now to left kidney pain that comes and goes, ear activity, fatigue during abx ramp along with mild brain fog during ramps. New IP pops up occasionally but is resolved within reasonable time. All mild compared to where I was a year ago!
I continue to be extremely cautious with Vitamin D. Wear my NoIR's only when on the computer, under fluorescent lighting and outdoors during sunny days. Overcast days I do fine without my NoIR's! I'm NoIR free at all other times, so have made considerable progress with my light sensitivity. My eyes have been such a long time issue with light sensitivity (over 20 years) that I'm hardly surprised that I'm still dealing with this---actually pretty pleased with my progress in this area. My left eye, continues to slowly improve with sight.
My days are very productive----I noticed yesterday while working on the computer, how my hands were thin---there was one small area on my right hand that had a 1/2" area that was swollen but no sign of swelling anywhere else. I did not even realize in all these years that they were swollen. I was just used to them looking this way. It's pretty amazing to see this tissue in my hands normal!
Thinking of you all! Deb
____________________
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
|
expate
Member in Phase 3
|
Posted: Wed Apr 29th, 2009 05:09 |
|
Likin' the new pic. You know, pictures paint a thousand words... or some such.
____________________
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.
|
Deb Grabetz
Member in Phase 3
|
Posted: Wed Apr 29th, 2009 12:20 |
|
Odette,
Thanks for noticing! It's me working! Thought that appropriate after being on medical for over two years. My doc is so thrilled because I'm his first sarcoid patient that he has treated in his many years of practice that has gone back to work from a lengthy medical. Cool stuff this MP!
____________________
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
|
Deedee
Member in Phase 2
|
Posted: Wed Apr 29th, 2009 15:54 |
|
Go, Deb!
____________________
Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
|
JanEE
Member in Phase 3
|
Posted: Wed Apr 29th, 2009 21:01 |
|
Deb, I also love your new pic. Wish it was larger though, as it's hard to see the twinkle in your eyes. Why are some pics so small and others are four times that size? Anyway, you're really gettin' there. Good for you.
Jan
____________________
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
|
Current time is 22:51 | Page:   1 2 3 4   |
|
|
|
|
