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Deb Grabetz
Member in Phase 2
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Posted: Mon Oct 22nd, 2007 00:33 |
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It's interesting to think after all these years I am finally, finnaly at a place where I am finding healing. It angers me for all of the years I have gone without good health and struggled so, to live the "normal life" I have led, so it is very bittersweet to be in this place! It is almost unbelievable to me sometimes that I have lived the story you are about to read...
Here is my story and its a long Sarcy tale: (Please bear with me as this is long but tells the perfect story of what people are living through without dx..at the end I also mention improvements I have seen already after only six months!)
Allergies! Lets talk about allergies. I've always seemed sensitive to something, even as a child. My grandma thought cod liver oil was important so at 10, I was given regular doses of the stuff...ugh... Drank/ate a lot of dairy...Milk was basically crammed down our throats...Seemed to have the typical sensitivities though, not anything that anyone would perceive as an "illness". As a teenager, my periods were very heavy and filled with fatigue and as I grew older they became worse with irritability that I now would consider beyond normal. My dad always had house projects going on, remodel jobs. When I was 14 he bought a house and practically redid the entire thing..lots of old house and dust. It seemed during these projects I would have a lot of anxiety..brain didn't feel quite right. I have always had to push myself, even though I have lived a very full life, my energy levels were coming from somewhere other than my physical self!
I loved sunbathing...spent my summers seeing how dark I could get and of course used baby oil as my skin was olive..I wasn't the skin type that burned. So why would I even consider sunscreen...too bad we get caught up in bad habits so young. I had also taken birth control pills for a couple of years.
I married at 19 and moved to the country. At this time my "allergies" seemed to be getting worse. We had an entire 80 acre field behind our house planted in oats and the oat dust...as I had so many chest problems that year, doctors thought asthma and was put on steroid inhalers. We heated our large farmhouse with a woodstove, which I've recently learned that between the smoke and mold on any indoor wood stored inside was probably not helping my lung issues. Yet, I was young and still never made a connection that I might be really ill with "something". We gutted our 70 year old farmhouse without any type of respirators..it chills me now just thinking about it...the garbage that I've inhaled. I suffered from chronic bronchitis and constant coughing (we have video tapes of our children and the background noise is always Deb coughing, coughing). When I caught a cold, it would never go away like everyone else in my family, yet lingered until it ended up in my chest and needed antibiotics every single time to clear up. This seemed to be "relieved" when we moved and stopped burning wood.
In my childbearing years, I delivered three lovely children (God's greatest gift to me) by Cesearean Section. After my last child was born I started having some very severe neck pain. At the time chalked it up to the epidural that I'd been given. But it was the kind of neck pain that would bring me to tears. This pain has literally been with me every day of my adult life, through massage, chiropractic treatment and loving family hands...Imagine my delight after taking Benicar for a few weeks and getting relief after all these years!!!!
In 1990, I was having severe groin pain and went in for a hernia repair...that fall my husband and I bought a 100 year old Victorian home...I had always wanted to restore a vintage home and was I in for a surprise! We moved into the house and started once again tearing out walls, dust and mold! Well, at this point my body was at a breaking point, I had just turned 35 years old. I also remember craving at the time scallops. Was eating them once a week in addition to the renovation stress on my Sarc body....My first flare began with this sensation that I was losing my balance. It is a difficult symptom to realize at first because it is so unnerving...soon both ears were fully plugged, I had lost spacial grounding (felt like I was detached from the earth) leg tremors, loss of partial vision in my left eye, neck pain intensified, facial edema, head felt swelled, intense fatigue, memory loss, brain fog, terrible concentration, body edema, low grade fever . I could at this point only connect to moving into our dream home...we soon moved out of our house as I felt I needed to see if this would relieve my symptoms, to get away from all of the dust and renovations and chemicals. We moved into a vacant house my parents had for sale (our current home) ...so along with being so ill, my family moved again in three months time.
Here we were with three young children 12, 9, and 6 and I was basically non-functioning. I also was working at a major float glass manufacturer here in Michigan and in Sales and continued to work very ill because the docs were scratching their heads. I loved my job and could not bear to lose it and luckily knew it like the back of my hand, this is how I survived through the Neuro. Looking back I have been to Haddes . We survived the second move and of course had to deal with people who thought I was crazy...I was crazy alright...crazy sick!
We went to doctor after doctor, lab results coming back were iron at 5, low platelets and all these neuro symptoms that no one could put a finger on. Other than to have one internist tell me to see a shrink! Oh how I wish I could remember his name today! I finally did not have the energy to keep up this "chase" and spent my days dragging like a drowned rat. It was visible just looking at my eyes that "something was wrong". My ears were fully plugged 24/7 for the next 3 years and throbbed, I lived with constant dizziness and worked under fluorescent lights that gave me no relief...there were times I thought I could not live another day this way...but somehow I did and prayed to see my kids grow to adulthood. Chemical exposure at this point, even a squirt of Windex would put me into a tailspin, perfume at work...again, I blew all this off to allergies. When I tried allergy shots found out I was highly sensitive to mold and any attempt to take mold shots made me extremely ill. I found a well known allergist named Dr. Derrick...he was the first compassionate doctor that I had dealt with and I will remember him always! At this very same time a terrible abcess tooth popped out of nowhere..could not be saved and I still have a trophy crown as proof. I had always had near perfect teeth and seemed to have tooth problems starting also at this point. Yet all along, I felt there was something "bacterial" going on in my body that docs were missing, as antibiotics would give me a burst of wellness for a few days.
At this point, I just struggled to get through each day. At 40, an aunt gave me a massage certificate for my birthday and I started going regular for massage. Within the next two years I started feeling some small relief from these horrible debilitating symptoms. By 1997, I was beginning to stay up again until 11 pm at night. It was a sign that I had "recovered"...or so I thought! Life seemed fairly good again, although I still dealt with fatigue, just not being able to keep up, exercise induced fatigue and pressure in my chest. My husband felt great after walking, me, I felt like I needed sleep and with general malaise. After my first flare in 1990, I started gaining weight..by late 90's I had put on well over 80 lbs. From a slim 145lbs to over 220.
I noticed again towards the end of 2002, I was starting to feel "run down". But blew it off to teenagers, a demanding job and a very busy husband. I decided in 2003 to start a business and leave my much loved job in Sales after 26 years. (Did I mention this entire 26 years I sat near a full glass curtainwall that caught afternoon sun?) It was stressful leaving but I loved the change. At this point I actually dropped 40 lbs from being on my feet rather than behind a desk, so I thought! Could it actually have been less sun exposure? Maybe I had actually taken some stress off of my body, less sun and no fluorescent lights. But I still felt "tired" all the time. In 2004, I had the opportunity to land a job with the airlines as a flight attendant...a dream that I had since 19! I made it through a very tough three weeks of training and found a job that just totally thrilled me! I could not wait for my next trip and to fly...I love people and where can you find more people than at an airport! Jet lag surely was a problem but isn't it for "everyone"?! ...and what about all of the UV exposure, I had no idea what was happening to me.
In October of 2005, I was having a lot of female trouble and my OBGYN suggested a hysterectomy due to fibroids and bleeding. During the surgery there were complications and my bladder had shifted all the way up to my belly button. I thought this was it...
In the spring of flare #2, on a trip to Chicago with friends, I caught the intestinal flu and was in bed the entire four days of the trip. By summer, I had come down with a three week respiratory infection but went ahead with a trip to Alaska. Not only did we eat Halibut the whole time there but also had fish shipped home...
In the fall of 2006, I was exposed to my husbands elderly uncle who had pneumonia and later MRSA. Two weeks later it was my 50th birthday and at my surprise party I was feeling ill. I thought, oh no bronchitis again..my chest was so full. My doc put me on an antibiotic and sent me home...this repeated itself three times and three more abx--until I finally asked for a chest xray...only to find I had pneumonia. OK, I had never had pneumonia but wasn't a bit worried...a week or so off work and I'd be fine...
My xrays showed pneumonia cleared but something was not quite right. Christmas day I had such pain under my ribs and pressure in my chest I thought I was having a heart attack. Took myself into ER on the night of the 26th (the next day was my husbands uncles funeral) and bless the ER doc who sent me for a CAT scan to find enlarged lymph nodes. My own doc didn't find this unusual and waited another three weeks, thought from the pneumonia. I finally had enough and asked to see a lung specialist. Well for a small town guy, he picked up right away, "I think you have Sarcoidosis"...My husband and I looked at each other with "relief"! We went to the surgeon fo my biopsy and he gave us other news that it was lymphoma. Of course often misdiagnosed, we spent the whole weekend thinking cancer. Finally after my biopsy it was confirmed that I had Sarc. At this point I realized what I had been so ill with through all these years and thought I could not get through this again... Still scary! Very scary! At this point I was not getting out of bed due to fatigue. Once the Prednisone started I was also having heart problems, BP at 185/135, horrible mental problems and general weakness, weight gain, constant appetite problems, . I truly thought I was not coming out of this one...
...and then I received an email from Meg! Bless you Meg. Although you know me not, just thinking about the day you sent me hope still brings me to tears. We had an appointment with Cleveland Clinic at this point and I was ready with my MP. Not going to happen...the doc there wanted me on methoxtrate and I wanted nothing to do with it! I was already in complete despair and the only thing that truly was giving me any hope was the thought of trying the Marshall Protocol.
I started MP, weaning from steroids, in April of 2007...what changes have I already seen...? since flare #2
- I'm no longer in bed 24/7
- My BP has stabilized again after being on Prednisone. I do not understand how people are able to take Prednisone. It made me so ill and so symptomatic, I cringe to think what would have happened if I had stayed on this much longer.
- Although still fighting stamina issues-- they are improving.
- Three skin Sarc "bumps" have cleared up. (Didn't know what they were!)
- Allergies have changed. I don't notice sensitivities like I remember being so irritated daily with. No longer take Allegra or nose spray by choice. Started sneezing again after none in years. "Everything" bothered me before MP.
- Neck pain much improved (yet have some IP in this area) My daughter who I would always beg to rub my neck is the one that noticed this!
- MCS has improved noticeably.
- My entire body feels calmer "inside"; this is the only way I can explain. It is probably one of my most noticeable improvements. My insides used to shudder...or tremor.
- Dreaming again.
- Right ear has opened up;sinus relieved.
- Was having bouts of choking on food; cleared up.
- Brain fog improved on some days
- Numbness in first two toes of left foot improving.
- IBS almost disappeared. (Had this daily for 30+years)
- Teeth close comfortably together without jaw inflammation.
- Aching tooth under crown and swelling in gum tissue; completely gone. I have complained about this for 15 years!
- Strange dizzy feeling that I never recovered from in first flare, seems gone; I believe this may be from avoidance of light and wearing my NoIRs. Whatever it is I love it! Love it!
- My ambition has started to pick up again (I've always been blessed with ambition to do things; just wore out quickly!)
Now of course, I have a very long way to go. My stamina has not returned from this second flare. My fatigue is much more intense this time around and have much more involvement with organs than I did with Neuro flare....and of course I am going through some pretty tough IP at times. I see my life ahead of me...being something wonderful to look forward to! I only hope that somehow what I have lived and survived will somehow help others...No dx for 17 years even in the midst of a flare!! What a shame! ...and looking back I may have been sick with Sarc way before this!
Thank you for a real beginning this time...and yes, I'M NOT CRAZY! Along with this wonderful treatment, I am blessed to have a completely wonderful husband who stuck with me not only once but twice, through these horrible times...and that is something to be thankful for! I look forward to posting many, many, many more improvements on this journey...Bless you all... Deb
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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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Joyful
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| Joined: | Sat Jun 9th, 2007 |
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Posted: Mon Oct 22nd, 2007 06:09 |
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You inspire me Deb!
I am so happy for not just you, but for your family as well!
You are an eagle and you will soar to the heights!
~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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Carole
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Posted: Tue Oct 23rd, 2007 03:31 |
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Congratulations, Deb, and thanks for sharing your powerful MP story! 
You've come such a long way in a very short period of time, and the good news to your great beginning is that there is more to come.
Keep up the great work and embrace your extraordinary results! . . . 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| ACE=68,43|
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Adrianne
Member in Phase 3
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Posted: Tue Oct 23rd, 2007 04:54 |
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Deb, You've got me crying happy tears!
Adrianne
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl 25D<7(Mar08) NoIRs limited outings covered
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Deb Grabetz
Member in Phase 2
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Posted: Thu Oct 25th, 2007 00:23 |
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P.S. to my Sarc story...
I realized there were a few symptoms that had been occurring that I had omitted from my story....not so important for me to know, I lived them ...but may be useful to others...so here is my P.S....I'll consider this a "Sarc-brain-bump" for forgetting all this!
In early 1980's experienced a couple bouts of strep throat. One was soon after having my wisdom teeth pulled before having braces put on my teeth (at 27!)
About the time that I noticed fatigue and brain fog returning before my second flare hit, also noticed my hair thinning from the top of my forehead through the crown area. Actually thought it had more to do with my age as my once long eyelashes were disappearing and eyebrows thinning out. I've since learned that this too was another symptom of a poorly functioning body.
In 2002-2003, I started noticing upon waking my hips would be so stiff that I actually shuffled around the house to get going, at least 30 minutes in the morning. Now, this was very frightening as my toes would also stiffen up and cramp. I may have read somewhere that this was a symptom of MS and started wondering if this is what had plagued my body through the years. The hip thing oddly "went away" yet today I am experiencing very strong IP in my hip and sciatic area...so it didn't go far!
In 1993, I had surgery on my nose as my ENT thought this would relieve some of the "ear related" symptoms that I seemed to be having. I had a deviated septum. My ENT corrected the septum and also put tubes in both my ears. During surgery he mentioned that there was a polyp in the right sinus but did not remove or biopsy (now, I'm not sure why looking back but sometimes when we're this sick we tend to not be as good of a health advocate for ourselves as is needed!) This of course helped my nose drain better but the dizziness continued to plague me. During the course of years and years of sinus trouble, I would go to my ENT both spring and fall, where he would inject the inside of my nose with steroids to help what he dx'd as allergic rhinitis. The injections helped for a few weeks but of course seemed to get worse.
In addition, I experienced neck lymph swelling, which would change. Back and forth from one side to the other and sometimes both. My ankles would also swell on the side which always seemed odd but would also come and go.
One very strange thing that I started noticing some time ago and have been unable to "label" was the tissue behind my legs, side of my thighs and up into my buttocks (all under the skin) had thickened almost into tiny horizontal rolls that I could run my finger over and feel. I chalked this up to gaining weight. Yet with this last flare also had one of this same type thickening appear on the left side of my rib cage (on my back under the skin). My doc thought the one on my back was calcium deposits...98% of this since being on Benicar has smoothed completely out into normal feeling tissue. This was a fairly large area of tissue that this affected.
Love my Beni!
Last edited on Thu Oct 25th, 2007 00:29 by Deb Grabetz
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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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Deb Grabetz
Member in Phase 2
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Posted: Thu Nov 8th, 2007 14:29 |
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Hello to all... Deb, Modified Phase II
I've had a significant change in back pain within the last two weeks both mid back and low back. It is mildy noticeable in the small of my back and what I would consider completely gone mid back. This has been plaguing me now since the pain first started April 22nd (2007) as I started weaning off of steroids and is = to...201 days! I'm seeing an increase in my stamina which has been truly affording me to do a little more socially than I've been able to do since becoming ill (almost a full year now)... along with staying covered up and protected I seem much more tolerable to outings.
Focusing on a list does not put me in total despair...So far this morning I have called the docs, placed an order at a local store, made a couple of personal calls and checked all of my email, talked to my daughter on the phone and it is only 9:45a.m....small progress to some...but even three months ago this would have put me in bed for the rest of the day-- and maybe not even managed that whole listl  ...along with the fact that I had a full day yesterday...traveling to my docs who is 45 miles from my home...out to lunch with my friend and a quick trip to Michael's craft store. *Grinning from ear to ear* for a small piece of my life back!
My doc has recommended lymph drain for my chest/stomach swelling..as any length of time on my feet my entire chest area swells including lower stomach. This swelling is almost immediate and totally uncomfortable...childbearing women would compare it to a term pregnancy belly...with a lot of pressure.
Happy to report another "set" of good results....with still a journey ahead....
Last edited on Thu Nov 8th, 2007 14:47 by Deb Grabetz
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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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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Sun Nov 11th, 2007 21:07 |
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| Deb, I am so happy to see that you've made so many improvements. Thanks for writing your full story. Although I don't have sarc (I think my mother does and I was probably on my way to that diagnosis as well), your story is one that I can relate to, as I am sure many other can as well. 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 3/2-5/25/08; Temazepam 9/26/08; Ph2Oct29
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Deb Grabetz
Member in Phase 2
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Posted: Fri Dec 14th, 2007 13:30 |
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Hello to all...(Began Benicar w/weaning April 2007--MP as of July, 2007).
Wanted to update a bit since my post of a month ago...I am in awe at how much of my mental energy is returning...It is a marvelous gift that is overpowering the rest of me...My mental energy is to my physical self, like a little grandchild running ahead of their grandparent..."Saying c'mon keep up with me!" ...and I see this as great progress from the gal who a year ago was endlessly falling asleep sitting up ---which progressed to not getting out of bed for four months... wheeeee! Yes, I'll be happy when the rest of me catches up!
I've noticed a positive change in my lungs. It seems my breaths are getting deeper and the pressure is much less. Either lymph or lung related or both. I sing when I attend church almost like I used to; unlike a year ago when my voice was barely audible most of the time and breathing in would cause me to go into a coughing fit. Even a short conversation would land me in bed fatigued!
As funny as this may sound to some, one of the things that seems to amaze me the most with my progress, beside the fatigue improving, is the fact that my right jaw, which is also the side that I've had such debilitating ear problems in early 1990 is so improved. For 17 years I have off and on fought with inflammation in this jaw/ear area. Heat packs, warm washcloths, massaging the area, anything to get a little relief from this very annoying symptom. My jaw today closes nicely together and the whole side of my face is almost back to normal. Every now and then I will get a twige of IP so a bit more to go but 90% better!!
I'm truly learning to embrace my IP and recognize it as healing. It takes a very long time in my opinion, to mentally get to this place where we really can accept the IP and move forward through the symptoms...and I know there will still be days that I won't be luvin' it...Like now, recently it has forced me to spend most of my time on the couch nursing abdominal swelling. Yet while I did so I've wrapped gifts, sent out Christmas cards, thought up fun games for Christmas morning with my family....Something that I was unable to care about a year ago...as my brain was as flat as a pancake from this crazy disease! Looking back, I did not even understand what was happening to me....but would sit for hours, wanting to do one thing and never getting it done!
So...on that note I'll sign off...There is surely a long road ahead for me...as for many of you...but WE are the lucky ones! I read a post of Trevor's recently where he had read some posts off of an old Sarc site...where it is all about doom and gloom...and it is true. When I allow myself to I think I'm not progressing fast enough or my IP is too much for me to take another day....or I'm tired of meds (I rarely took Tylenol before this!) ...all one has to do is look up posts by those who are on other treatments to see their dismal stories...It's not pretty!
Happy Holidays to all...and many blessings your way!
 WELL!!!! Deb
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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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Deb Grabetz
Member in Phase 2
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Posted: Fri Dec 14th, 2007 13:30 |
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Hello to all...(Began Benicar w/weaning April 2007--MP as of July, 2007).
Wanted to update a bit since my post of a month ago...I am in awe at how much of my mental energy is returning...It is a marvelous gift that is overpowering the rest of me...My mental energy is to my physical self, like a little grandchild running ahead of their grandparent...saying, "c'mon keep up with me!" ...and I see this as great progress from the gal who a year ago was endlessly falling asleep sitting up ---which progressed to not getting out of bed for four months... wheeeee! Yes, I'll be happy when the rest of me catches up!
I've noticed a positive change in my lungs. It seems my breaths are getting deeper and the pressure is much less. Either lymph or lung related or both. I sing when I attend church almost like I used to; unlike a year ago when my voice was barely audible most of the time and breathing in would cause me to go into a coughing fit. Even a short conversation would land me in bed fatigued!
As funny as this may sound to some, one of the things that seems to amaze me the most with my progress, beside the fatigue improving, is the fact that my right jaw, which is also the side that I've had such debilitating ear problems in early 1990 is so improved. For 17 years I have off and on fought with inflammation in this jaw/ear area. Heat packs, warm washcloths, massaging the area, anything to get a little relief from this very annoying symptom. My jaw today closes nicely together and the whole side of my face is almost back to normal. Every now and then I will get a twige of IP so a bit more to go but 90% better!!
I'm truly learning to embrace my IP and recognize it as healing. It takes a very long time in my opinion, to mentally get to this place where we really can accept the IP and move forward through the symptoms...and I know there will still be days that I won't be luvin' it...Like now, recently it has forced me to spend most of my time on the couch nursing abdominal swelling. Yet while I did so I've wrapped gifts, sent out Christmas cards, thought up fun games for Christmas morning with my family....Something that I was unable to care about a year ago...as my brain was as flat as a pancake from this crazy disease! Looking back, I did not even understand what was happening to me....but would sit for hours, wanting to do one thing and never getting it done!
So...on that note I'll sign off...There is surely a long road ahead for me...as for many of you...but WE are the lucky ones! I read a post of Trevor's recently where he had read some posts off of an old Sarc site...where it is all about doom and gloom...and it is true. When I allow myself to I think I'm not progressing fast enough or my IP is too much for me to take another day....or I'm tired of meds (I rarely took Tylenol before this!) ...all one has to do is look up posts by those who are on other treatments to see their dismal stories...It's not pretty!
Happy Holidays to all...and many blessings your way!
WELL!!!! Deb
Last edited on Fri Dec 14th, 2007 13:56 by Deb Grabetz
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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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eClaire
Member in Phase 2
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| Location: | Virginia USA |
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Posted: Fri Dec 14th, 2007 13:52 |
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| Deb, Your progress is so incredibly encouraging. And thanks for the reminder that many people on other treatment programs are miserable and they are NOT getting better. Sometimes it is difficult putting one foot in front of the other (or one Benicar in the mouth after the other), but we know the alternative: increasingly poor health. Thanks for the gentle kick in the behind! 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 3/2-5/25/08; Temazepam 9/26/08; Ph2Oct29
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Deb Grabetz
Member in Phase 2
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Posted: Wed Jan 2nd, 2008 11:01 |
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Hello all! A very Happy, A very Healthy New Year on its way...
First of all, I'd like to respond to Claire...it is wonderful to hear that your energy is working hard Claire, to push through! I remember as I was healing with my first flare of Sarc, I could feel my energy working hard just like this, as if to compare to a spring bulb pushing through the hard earth to show its beauty. This will be us...For those of us who struggle with such debilitating fatigue...it is exhilarating when a bit of energy shows its sunny face... 
Which brings me to my next point. Taken from my most recent Mod Phase II posting...Looking back...This time last year I had been struggling for six weeks and then admitted to the hospital for 24 hr observation due to my breathing problems, pneumonia, chest pressure, intense rib pain, extreme fatigue, etc. Had gone through series of heart tests and CT saw enlarged lymph. (No dx yet...) Very miserable and not even able to get out of bed for close to four months. All meals were in bed as my energy was so poor, I could barely brush my teeth. I keep reminding myself of the progress that I've made since July of '07 when starting MP!
This week I've had some fair herxing and a couple of very nauseous days that got me pretty good and I'm still unable to work but the progress I'm making is incredibly visible. As I mentioned my energy with my first flare ('91), it took me close to 6 years to start regaining my energy. (No dx; no meds;use of supplements only). Now, after being on MP six months--- This New Years eve, I picked a few things up from the grocery story, made a cheese ball and vegetable dish to take to our friends for dinner, put away Christmas gifts, spent dinner at our friends, rode around looking at Christmas lights and came home after 11 p.m. Oh yes, I was beyond tired that night and do not choose to spend every day this way but I was capable. As compared to eight months ago when I was barely able, as I said, to even brush my teeth!
Now, I see this as progress...undeniable, incredible progress...and began my New Year with so much hope for a healthy future! Last year at this time, even as positive of a human being that I am, I was sure there was no rebound in sight this time! I was recently at a funeral of a friend and our priest talked about "Surprises"...in life, we have good surprises and bad surprises...our friend had passed suddenly with a heart attack at 56 and was buried on Christmas Eve...a bad surprise for his wife who found him...as I sat listening to the sermon I noticed a comparison with chronic illness recovery, like we all are going through...
...Some days we have good surprises that we associate with healing and making progress... and on other days we have the bad surprises which show themselves as herx, pain and doubt...yet even those "bad surprises"...are bringing us closer to wellness...I wish for all of you more and more "good surprises" in 2008!
BE WELL! Hugs! Deb
Last edited on Wed Jan 2nd, 2008 11:02 by Deb Grabetz
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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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Deb Grabetz
Member in Phase 2
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Posted: Tue Feb 19th, 2008 17:03 |
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Hello to All
It has been about six weeks since my last update and I'm happy to report that things are improving weekly. My most notable progress since the beginning of the year is continued energy improvement. There was a time within the last 14 months that I was questioning whether I would be one of these people who were doomed to be confined to a bed for their remaining years. I could not see past this point and now understand how people do remain bedridden for years, without proper treatment, such as we have all found!
In my earlier reporting I had noted that during my first flare in 1990, I had lost 75% of the vision in my left eye. Through the years, not being dx'd yet with Sarc, there was always this fear that I would have the same "something" attack my right eye and become legally blind. My right eye has been working hard over the last 18 years to compensate for this blindness. It is incredible to update today that my sight is returning in this eye! I would gauge this at about 50% improvement and look forward to complete recovery! My opthamologist all along has been doing visual field testing to watch this and it was suggested this was a pit in my optic nerve, which by the way I was told would never reverse itself! I have been keeping an eye (no pun intended) on my sight since starting MP as I was convinced now that this was a Sarc lesion, missed all along.
Ahh, now I understand why I am always thinking
OUTSIDE THE BOX when it comes to what IS possible with healing on the MP and what is IMPOSSIBLE with standard, accepted treatments offered to the general public.
Within the next couple of weeks I will be moving into Phase II-- Another graduation! My life as I knew it is starting to return, slowly, slowly after almost 8 months on MP--but steady now and I am so very grateful to the MP Staff! I expect that it will be even better than I could have hoped for! My first flare cleared itself after seven very long years and left me in remission but struggling with many symptoms...Thank you from my heart for giving me another chance at life! A healthy life...
Last edited on Tue Feb 19th, 2008 17:05 by Deb Grabetz
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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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rhanks1
Member
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Posted: Tue Feb 26th, 2008 17:39 |
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Hi Deb,
You wrote me a nice note about a month ago, thank you for that. I wrote you a long, probably boring account of my illness, which seems remarkedly similar to yours. Some how I erased it right before I SENT it. I was so discouraged, and tired, I figured I would do it another day. Well I am not going to go through the whole litany again, suffice it to say, our histories are extremely similar, which is what prompts me to write you. Unlike you, I do not have a definitive diagnosis for my illness. I truly think it is sarcoidosis, but the doctor I was seeing would not even consider it, because I am white. Weird huh? Long story short, I am mad at him, and trying to find a new doctor. One thing I noticed in an October post of yours you mentioned you might get lymph drainage from your abdomen, or chest because of swelling. Did you do that? I too am extremely swollen, head to toe and my lungs are congested, tight, heavy, hell I just breathe.My feet are also an issue, because it limits what shoes i can wear, and the abdomen swelling is just sort of embarrasing. It looks like you haven't been on the protocol much longer than me, but I am back to 25mg of minocline with no ramp up in sight. I am not jelous, just want to know what you have been doing. Any suggestions, that you have will be so appreciated. I can be compulsive when I am committed to something. Getting healthy is my new compulsion. I will do anything and everything it takes. Thanks again for your sweet note, you are the only person that has contacted me and offered me encouragement. It really meant so much to me.
Rebecca (replies to Rebecca in phase 1)
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FSGS AIN hypothyroid hypertensive edema swollen lymph nodes asthma| synthroid nifediac|albuterol 'NoIRs,low lux home| 1,25D-24.3 25D-7.5| beni40mg x3| mino|
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Deb Grabetz
Member in Phase 2
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Posted: Wed Feb 27th, 2008 14:06 |
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Hello Rebecca,
Thank you for the extremely kind note.
My doc did suggest the lymph drain for the abdominal swelling, which by the way came on after only half an hour or less on my feet and was intense and miserable. I would not recommend though as it seemed to put more strain on my already strained body. I had unbearable IP after the drain and would not do again.
I do find much relief and improvement with my energy from the cranial sacral treatment and do highly recommend this in correlation with MP. Or even LIGHT massage as both help move the fluids through the body. Fluid build up is certainly of discomfort and also seems to make me very irritable. It is similar to "that time of the month" X 10!!
I sent you a long note via email also...Again Rebecca, thank you for the very kind note and any time that I may be of help, please do not hesitate to drop me a note...As our friend Fred from West Virginia reminds us..."We are all in this together".
Take care...Deb
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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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Deb Grabetz
Member in Phase 2
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Posted: Sun Mar 9th, 2008 15:53 |
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Very excited to update that I've begun Phase II! I have now been on the MP since beginning weaning steroids (April '07) Beginning Phase I (July '07). So after eight months I've reached Phase II! Which makes me so very thankful for quite a few things, one that I didn't wait any longer than the month I took reading everything I could on the Marshall Protocol. I am so very grateful that I took that very tough step to committing to this treatment as my health has seen so many improvements already in eight months.
I just happened to think last night about the pain that I would get in the back left side of my head. I realized that I've not had that sensation in many, many weeks. This happened often when I was flying and also I would wake up with this pain. As if I had a pulled muscle and my head felt sore and tender. I've had three of four sarc lesions on my legs clear completely up with the last lesion, which was by far the largest-- I would compare to the size of a boil, now almost flat. Within the last couple weeks my stamina has improved when standing. I have in past months been unable to stand for more than 45 minutes and now am on my feet for well over a couple hours before tiring. Many previous symptoms have become much more bearable over the last month or two. Even having some days of relief with my ongoing heel/ankle pain.
One area that I have also seen a big improvement with is with my diaphragm. Any type of activity that put a strain on my lungs, my diaphragm would tighten right up as if a charley horse had set in. This was very miserable and would feel almost as if I had the wind knocked out of me and forced me to sit and regain my strength.
Yesterday was able to go to the theatre with friends and enjoy tickets that had been given to me for my 50th birthday, the month I became so ill. (These had expired but fortunately found a kind rep at the theatre who was willing to extend these tickets based on my health.) This was the first time I had "dressed up" for an outing in 16 months! We had dinner after and returned home sometime around 8:00. It felt completely wonderful to experience the real world again. Slept well and today only suffering from some mild back pain.
I am so very grateful to the MP staff for their continued support...and shudder to think what things would be like for me today without MP!
Bee well...Deb
Last edited on Sun Mar 9th, 2008 15:55 by Deb Grabetz
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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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AK Teri
Member in Phase 3
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Posted: Mon Mar 10th, 2008 22:42 |
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Deb,
I totally agree with your mention of cranial sacral therapy in the Feb 27th post. I see a physical therapist that has this added specality training and cannot say enough about it. With my rheumatoid arthrits she is often able to dissipate a lot of tension and tender points. If it wasn't for her hard work last year, I feel strongly I would have had a shoulder freeze up. The bottom line is my pain is definitely more managable if she works on me regularly.
It is great to read your positive progress!
Teri
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RA Jun07,D125=60 D25=35(Aug07)D25=13(Nov07)
D25=15(Apr08)D25=7(Sep08),Ph1Aug07 ModPh2Nov07 Ph2Jan08 Ph3Jul08,NoIRs Covered
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Deb Grabetz
Member in Phase 2
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Posted: Thu Mar 20th, 2008 16:35 |
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Hi Teri,
Yes, I hope others will give the cranial work a try it is certainly encouraging stuff as I journey through MP. I have found others from Sarc support sites also find some relief from the cranial work!
Currently at fourth week in Phase II-Level 1; going to Cycle 3 soon. Major adjustments coming into Phase II. Spent 10 out of 20 days of my first two cycles in Phase II in and out of bed. Have tried adjusting a few meds and finding myself at a much more comfortable level at this point, in fact much better than I have been in months!!! In fact I have ventured out more this week than I have since starting MP almost a year ago and doing well. Very well going out. Much less light sensitivity over the last couple of months. I was able to comfortably ditch my indoor 10% NoIR's and trade for 40% indoor NoIR's. I continue to use 2% NoIRs for outdoor use as they are the most comfortable feeling. Our bodies do seem to automatically identify the light sensitivity; there seems to be no rule of thumb for me on this. I just adjust my NoIR's in response to my body responses. A few times while on the computer I have switched back to 10% for a comfort level.
Also, have longer periods of standing without the weakness, back pain, and general malaise that I have been reporting in my posts over the last year...Back pain is now occasional, rather than every single day. Experiencing a little neck pain that has been gone for quite some time (only since beginning MP) but not surprised. I believe I have been heavily laden with neurosarc for a very long time and my neck has been a very big part of this picture. My intense back pain herx that surfaced once starting MP solidified, what I had long thought, spinal involvement for many years. Continue to have very strong heel pain which is strongest when waking and standing or after sitting for long periods. I believe this is connected to an old injury to my ankle which never seemed to bother me until I started Prednisone when first diagnosed Feb. 2007.
Resting as needed, does now re-energize me unlike when I first flared 17 months ago. Resting back then was just a necessity for survival!!
I'm happy to say that after all these months I finally feel much more in control of my herx than ever. This was not an easy point for me to get to as I'm sure others have experienced, it was a constant battle adapting to the ups and downs of every med change/increase. I've learned not to expect what worked last week to work this week, or even in a 24 hour period. I've also learned to read as many posts as I can of other members-- at the same levels that I am-- including those of current members and previously ill members-- to see if any correlation to my herx.
Moving steadily forward.... Wishing everyone well.... Deb
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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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Deb Grabetz
Member in Phase 2
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Posted: Mon Apr 7th, 2008 18:44 |
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Hello all...
Updating progress with Phase II. Within the last week I have had to adjust meds in order to get my IP back to tolerable. My IP had become intolerable to the point that I knew in order to progress with a positive attitude I would need to make some meds adjustments. My fatigue and weakness had progressed over the last month and had become the main IP I was experiencing and had me bedridden again. Now, I'm back to working on all areas of healing as my IP in other areas has resumed and I'm much less fatigued. Still resting, just not at an intolerable level. 
There has been such huge improvement with my lungs.
Although, still experiencing burning in my chest/rib areas from my response to the protocol. It seems from what I'm sensing that my lungs are "bigger or fuller" than I can remember in years. Although my breathing tests have always come back in a "normal range" and the docs thought all these years I had asthma, I have never had normal lung response.
I fatigued easily with activity (before and after weight gain), always had extreme sensitivities to inhaled chemicals, dust etc. and so always chalked it up to allergies. Until I was dx'd with Sarc 18 months ago. Now I realize it has been the Sarc causing my difficulties.
It is wonderful to feel my lungs feeling so open and I'm sure this will only get better as I continue with the MP treatment. In past weeks I have been doing a lot of clearing out in my chest as I cough! Good stuff!
My ability to stand at the present seems to be improving. I've been able to do a few more tasks while on my feet as compared to a couple of months ago. My chest continues to tighten up if on my feet for extended periods of time so I try to adjust my tasks to what my body is telling me. Pushing being on my feet too long, ends up with my rib cage feeling like I'm being squeezed by King Kong!
All in all progressing nicely. I have continued to be quite consistent with my avoidance of sun. As I'm still unable to work it is fairly easy to adapt to this lifestyle. Indoor while watching TV/computer I'm comfortable with 40% NoIRs yet continue my 2% ALWAYS when I do venture outdoors. Uncomfortable with any higher transmission.
Bee well....Deb
P.S. I DO WISH TO ADD A VERY IMPORTANT NOTE:
There are various sites devoted to Sarc and chronic illness. I've often read and also been told by docs that this disease will go into remission on its own. It is apparent from the progress I have seen since starting MP as compared to my previous ill state, that my progress has absolutely nothing to do with "Sarc going into remission on its own" but in fact my own body response to this protocol.
It has now been 10 months since I started MP. My first flare occurred in 1990 and took me seven long years to "settle" without any treatment and also left me with various symptoms, including a highly allergic state. Even in this short 10 months, my so called allergies, which I believe to be a symptom of having Th1, have settled considerably along with MCS. I have noticed that when exposed to chemicals I still have a brief reaction but it is brief...as compared to dizziness and fatigue that used to stretch out through the day after exposure!
Great stuff if you ask me!
Last edited on Mon Apr 7th, 2008 20:05 by Deb Grabetz
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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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Deb Grabetz
Member in Phase 2
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Posted: Wed Apr 23rd, 2008 20:12 |
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Going on over three weeks now since making an adjustment with my meds which has helped me so much by way of energy and milder IP. Happy to say that I'm pleased with my decision and feel ramping will present better outcome on my adjusted med.
A lot of activity in my back (spine), parathesia type response, having some trouble standing again for long periods as this relates to my spine. Mood very tolerable. Finding some consistency to how I respond vs what days I am taking my meds.
Something completely fascinating to me is my hair!!! My hair has never been overly thick but years before I became ill it was full and a great texture. Within the last few years I've noticed a lack of luster, thinning, limp and pretty much blamed it on my age. Not so, after almost a year on MP I'm seeing some very notable changes. Usually it would take a day of accumulating hair spray and other hair products to get any fullness into it...but after washing I am able to see such a difference! Very ! My hair feels full of body when I run my fingers through it, such improvement with texture that it would be hard to dismiss....I'm probably going to lose some just from playing with it all the time It's really an interesting and much welcome find in my MP treasure chest!
Last edited on Wed Apr 23rd, 2008 20:14 by Deb Grabetz
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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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kelly well
Health Professional
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Posted: Wed May 7th, 2008 23:26 |
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| Deb, Thank you for posting. What an encouragement to read your story. I too have a swollen abd. ( I recently had an internist tell me my abd. looked like I had had 6 children especially since I've never had one!) I do think my facial edema is resolving. I'm only 2 months on the MP. It has been hard but after a trip to Mayo's 2003. and swollen lymph nodes where they thought I had leukemia when I was 4 years old ...I have just now in Feb have a sarc DX. It's wild to look back and see years ago swollen lymph nodes on CT scan , insomnia ,etc, bronchiectisis, Chf, and aterial fib, but no sarc DX. I thank God for MP and those who help me on it. I'm homebound , but have hope. Your story and especially the abdominal swelling I could relate to well. Sincerely grateful, kelly well PS I also could relate to your having a good man as a hubby, Mine has been through hell and back more than a few times with me. He met with my MP doc yesterday for 1.5 hours and that helped him understand so much. He is very pro MP now even though he won't go on the site (yet) . Glad you have family support too. although I feel I've gained another (MP)family in this journey to health. Last edited on Wed May 7th, 2008 23:51 by kelly well
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Sarcoidosis bronchiectisis atrial septal defect atrial fib hypothyroid dysphagia CHF gout COPD skin lesions 125D66 25D52 Ph1 Feb08 ToprolXL estradiol Synthroid Seroquil lortab valium protonix lasix prn 25D34 (May08),Ph 2 7/08 25D29(7/08),10/08 25D28
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