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tom
Member in Phase 3
| Joined: | Mon Sep 12th, 2005 |
| Location: | New York USA |
| Posts: | 215 |
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Posted: Mon Sep 3rd, 2007 10:29 |
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Day: 602 (52,012,800 sec) Beni: 40mg q6h, Phase Three
I can’t say I’m really interested in mitigating my symptomatic responses. And, it’s not because I feel the martyr, rather it is this overwhelming need to feel connected in a very real and perhaps strange way to my recovery… if that makes any sense. Mind you, I’m not condemning those who do. As a matter-of-fact their daily responsibilities may even mandate it. This whining or rant that I apologetically subject others too is not so much a cry for help but simply an emotional purging, for which this thread serves its medicinal purpose.
There’s that ever small voice in me called conscience, that doesn’t have the heart to subject another poor unknowing sole to a temporal life of solitary confinement-even if it is with me
Besides, if she is interested in a sweaty tee shirt folding boxes, there’s always that chance she’s moving.-smile.
Thanks for the time link. I’ll think of this protocol in seconds…that should do it.
I guess I haven’t posted often because I really don’t have much to say. I mean, I feel very devoted to the program, just not very engaged. Their have been some very good developments as well as bad. The good, of course far more pronounced. I have recently discovered that my hair which was previously dry and stiff has become smoother and softer without any added change in my shampoo repertoire-sorry Pantene. I remember many years ago being told that body chemistry is often reflected in hair analysis. I wonder if they can pick up frustration. On another good note I went for a bicycle ride. But, instead of the normal 1 ½ miles, I must have biked 5 miles before returning to my cell (aka- lovely furnish apartment). I felt so good I could have pedaled forever. No aches or pains
As for the bad, well it would probably make a great Twilight Zone, or a horrible reoccurring dream: I’m really late, and the express trains are just not running. Frustration is building and the clock is ticking away. After what appears to be an eternity, a train meanders into the station. Much to your chagrin, it’s the local and yes, it will be making all the stops. You think it’s a no-brainer, so you jump on. Yet, as you look back your surprised at just how many people have decided to wait on that platform, taking their chances on the next train? Sure, you know you took advantage of the best option but as the train drags itself along the tracks and into the dark tube, you can here your outbreaks of uncontrollable expletives wondering if you will make it on time. What a weird dichotomy, where you vacillate between thankfulness and ungratefulness-placating yourself by dismissing it all off on the human condition.
For me, at least, a big part of this recovery is just enduring the frustration of solitary. When you think about it, it’s quite bizarre. Visualize this tiny 300 sq ft apartment dimly lit with 7 watt bulbs. A carefully chosen green thrift store blanket is added to the windows to complete this unique experience called solitary. You may better know it as the “cave”. I live; I breathe, and eat all in this 15x20 space. But for others life continues on a massive scale, for on the other side music can be heard playing, children laughing and backyards hopping with barbeque activity. Sundown strikes, the blankets come down and the shades go up to reveil dark quite and desolate streets where often times, not so much as an echo of the day’s activities prevail. It’s as though the day never happened; for indeed, it’s best to remind yourself that it never had. Memorial Day, Labor Day… why it’s as though the entire season never happened. Yet through it all there is this unexplainable sense of relief. Sunsets are moving in your favor, another summer spent another summer survived. A year older for sure, yet neutralized by the year closer you are to your coveted goal. And you hope, sarcastically, that the former won’t eclipse the latter. …Two down, maybe one more to go.
Moving toward the prize
Tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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SherryH
Member in Phase 2/3
| Joined: | Sun Jul 2nd, 2006 |
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| Posts: | 265 |
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Posted: Tue Sep 4th, 2007 06:00 |
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Tom.
Found your post very evocative and moving. Can relate to the isolation at times as well as your evidently profound desire to get well. You have a keen way of getting down in words many of the things I know I have thought along the way. I'm happy to read about your biking. I am not at that kind of exercise level by any means, but do enjoy the evening outside walk around our property and think I would very well go crazy without it. Sometimes it is 5 minutes, sometimes 20. Just being outside and moving is incredibly helpful. The other sanity increaser and isolation buster for me is to have others come into my home on a regular basis for visits and social stimulation. Mostly in the form of book club or bible study and I must admit that sometimes I sit there with not one blasted thing to say as I have not read my required material or my brain won't function well enough.  but, they are lovely people all and understand my situation and extend me grace. Thank goodness, as I greatly need their continued presence.
Thanks so much for sharing your stirring post, I could imagine being right there in your apartment with you raising your blinds and looking out the window...and on the trains.....remember...though it feels often as if you are alone, we are here along the journey and keeping us all in prayer and hopeful support.
Sherry
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Pacemaker 2001: sinus node exit block; subcutaneous lumps; acid reflux; thyroiditis; neck pain| 6/06-125D/25D: 82/25; 9/07 25D: <4 8/1/06 reduce D, NOIRS, pepcid; 9/29/06 Beni 10/14/06 PhI; ModPh2 3/07
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LeAnne
Member in Phase 3
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Posted: Wed Sep 5th, 2007 12:52 |
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Hello, Tom.
I noticed you were counting down the seconds. That certainly makes time on the MP sound longer!! You humor me. I know it seems like forever. I remember feeling isolated. I am so thankful for my teaching job. It has helped me stay connected. I remember when my only connection with people was this website. It will get better. I am not out of the woods enough to venture outside for long periods of time, certainly not for a holiday barbeque, but maybe next summer. The waiting is so worth it! (52, 012, 800 sec)
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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tom
Member in Phase 3
| Joined: | Mon Sep 12th, 2005 |
| Location: | New York USA |
| Posts: | 215 |
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Posted: Sun May 18th, 2008 03:19 |
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MP 859 days ( 2 years 129 days)
NON MP MEDS: Ambien 10mg as needed for sleep-almost daily
SUN EXPOSURE (Last 1 weeks) 20 hours outside, 25 Hours inside (open windows)
SYMPTOMS: Tolerable, (Rating 4-5) IBS- mild-0, night sweats-0 to mild, chest burning- mild to moderate, reflux- 0 to mild, brain fog-mild to moderate, swollen glands-mild, facial eczema and scratching- 0, exercise intolerance- moderate to severe, Insomnia- moderate to severe.
OSERVATION: After my last post (phase 2/3 forum) I continued to take the abx every day in order to help modulate my herx and although it proved at least initially effective, I was (and continue to be) unable to maintain the level of herx reduction over an extended period of time (sometimes greater relief from symptoms are realized with abx administered qod, qd or not at all, with similar observations for abr; q6h, q3h, or not at all.) I theorized that this modulatory shifting was happening primarily to increased light exposure as well as the increased inclination on my part to become more physically involved with the carpentry trade work in some of these very renovations. Although the tasks at hand were physically loaded and like today left me drained and recovering, I as well as others have been surprised at just how much I have been able to accomplish-a level of physical involvement that would have been unthinkable as little as a year ago. Perhaps the shifting on and off of abx coupled with high levels of sun exposure and physical stress may make it somewhat more difficult to assess, at least scientifically, the direct effects that abx played and continues to play in this modulatory effect, but I would short sighted if I excluded the frequency and level of my physical participation and its roll.
CONCLUSION: For me this experience has been both draining and inspiring all at the same time. One day I found myself producing a fair amount of work only to be shattered with a day of complete and utter incapacitation. Yet, though it all this experience with all of its challenges and disappointments has clearly reaffirmed the effectiveness the MP has had on my illness. No doubt I took on too much work and will probably sub contract my portion of the work that remains. However, call it machismo, testosterone, or a complete act of stupidity; for me this perhaps was just something I needed to see.
Thanks for reading…Tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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Lottie
Board Staff
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Posted: Sun May 18th, 2008 14:44 |
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Tom,
You seem to be going through the MP well, in spite of the problems you are having, in that you have learned to adjust the MP medications to help you get through the seconds of each day.
Lottie
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Dx- Sarc 1999 Cardiac, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25 D 48, 25D 17) (May 05-1,25D 35, 25D < 5) Pred x5yrs-now off! 5/19/04 beg Benicar 10/11 beg Mino, 1/24/05 mod P2, 2/2/06 P2, 1/6/07 P3 - Worked as RN until back injury
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tom
Member in Phase 3
| Joined: | Mon Sep 12th, 2005 |
| Location: | New York USA |
| Posts: | 215 |
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Posted: Fri Jan 23rd, 2009 23:09 |
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Alumni Update:
Total 1110 days (3 years 15 days) Less 10 months off= 810 days
MP MEDS: Beni: 40mg q4h, Phase 3 meds
NON MP MEDS: Ambien 10mg as needed for sleep-almost daily
SUN EXPOSURE (Last week) 5 hours outside (This week) none
March 22, 2007 25 VD (<7.0) Ref: 9.5-52 / VD 1,25 (22.4) Ref: 25.1-66.1
December 6, 2008 25VD (29) Ref: 20-100 / VD 1,25 (34) Ref: 19-67
SYMPTOMS: Tolerable, (Rating 4-5) IBS- mild-0, night sweats-0 to mild, chest burning- mild to moderate, reflux- 0 to mild, brain fog-mild to moderate, swollen glands-mild, facial eczema and scratching- 5, exercise intolerance- moderate to severe, Insomnia- moderate to severe. Mild dizziness, light headedness 3-5
OBSERVATION: Well, it was February of 07 that I decided to cycle off the program. I had 2 ¼ years under my belt so it was something that I really didn’t want to do. But family circumstances dictated otherwise. The general nature of the task was to supervise property renovation after my fathers passing. That included construction renovation on a few small pieces of property and some rentals, no big deal, right? Well, talk about long hard slog. 6 months turned into 9 months as I dragged through the process. I still have a rental to put together in the spring.
In reflection there were a few reservations but also several positive observations. The primary one was that I could perform many laborious tasks that would have been unthinkable just a couple of years ago and I could do it while maintaining a sane mind, at least from this biased perspective.
Reservations, well, clearly the D levels reflect the lack of compliance to sun and diet restrictions. So that’s the price you pay for those delicious fish sandwiches.
CONCLUSION: If I had to do it over again and take those 10 months off, I probably would have bowed out and ungracefully at that. But it proved to me in so many categories that this program really works, and for me that’s all that counts. So, I move on from here with my goal intact and all of those hopes and dreams reinforced.
To the prize!
Tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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