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JanEE
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Posted: Sat Jun 27th, 2009 21:47 |
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Odette, 
Claire, I can relate to being psychologically burned out since going through such intense IP from the first of this year, which, I think, is just beginning to let up a little as I've been able to get outside a bit and do some gardening. I think I may wait until Fall to re-start the protocol. I was somehow under the impression that you were doing okay as you are usually so cheerful and encouraging to others. I'm sorry that this has hit you so hard recently. Hopefully better times are just around the corner.
I have sure been thinking, and wondering, a lot about where I am right now on the protocol. I've been wondering if one should stop trying to get their 25-D levels lower than 9 or 10, and try to keep it around 12, to avoid going through such intense IP, or Stage 5 (wondering what the experts would say about this). I know I was doing fine until my D level dropped from 10 to 5 on my January testing, and then all h**l broke loose---or is this the way it has to be? Maybe it requires a more observant balancing of various elements to keep things under control. I don't know if I'm making sense, but I've been wondering, and thought I'd put my thoughts out there. I know when I went to the doctor back in January, when the D dropped suddenly, nothing was said about the possibilityof more intense IP until it was too late (of course I'd been reading about others going through this but somehow I didn't take notice of the low D factor or even think it might happen to me). In fact nothing much was said at all except telling me the number. There still was nothing said in the months to follow, except that I'm doing fine. I've not been doing fine. Killing bugs maybe, but not enjoying life much. It's so easy to fall into the trap of thinking you're not getting well, but getting worse, and that the MP is not working. I guess I'm a slow learner, but I've finally decided I'd rather kill bugs a little more slowly and feel a little better. I've noticed that many people going through what we are seem to have intense back pain, which helps me accept mine (along with the hip pain, bloating, and stomach pain), but it's sure no fun.
Sarah Jane, I think we all go through life making creative changes here and there. I quit painting for years also because I became interested in making repros of antique porcelain dolls, as well as sculpting my own. I loved it so much that I could hardly think about anything else, except maybe gardening and landscaping, which also fell into that category. So, I thought when I was beginning the protocol it might be a good time to begin painting again, but I wasn't able to right away because of the light sensitivity. A couple years went by and I began again and did some drawing and colored pencil work. I also tried oil painting again, but wasn't getting the hang of it, so decided to switch to smaller paintings until I did. I did manage to finish a couple and then another project got me sidetracked, and split my time in two again. And now, with all this strong IP I just don't have the incentive or drive to do much of anything. I've found though that art magazines, and looking at all the wonderful things others are doing, is giving me the urge once again. It's funny how I can sit here and type posts and answer email while feeling rotten, but don't feel as though I could sit and paint. One day it will happen. And I predict it will happen for you too. In the meantime you are still building your inventory of jewelry, which is still giving you the outlet for your creativity. I'm looking forward to the re-opening of your Etsy store, so I can peruse your wares.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
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Posted: Sat Jun 27th, 2009 22:28 |
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I was doing really well, however, anniversaries can be challenging. Today feels like the corner!
Jan what you are asking makes sense. While I am not in stage 5, I often think about the very issue you raise.
ClaireLast edited on Sat Jun 27th, 2009 22:31 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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JanEE
Member
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Posted: Sat Jun 27th, 2009 22:50 |
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Claire, I'm glad to hear I'm not the only one. It seems though, that I have read somewhere that one can be in Stage 5 even while in Phase 2---that it has nothing to do with which phase one is in. How can you be sure that you are not in Stage 5? I can't remember what your 25-D is.
Yes, I agree that anniversaries can be challenging, especially the first ones. I've also read that it takes at least two years sometimes for the shock and pain to lessen, whether it's divorce or death, and I've found this to be pretty true. That doesn't mean that you can't get on with life, just that it can be challenging at times. It appears to me that your attitude and outlook on life is so good that it's helping you immensely. I've read your posts from the past and you've come a long way in your healing, not only in your body, but in your heart. Take care.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
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Posted: Sun Jun 28th, 2009 03:38 |
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Well, my 25D is low (less than 4) and has been for some time. I think I am not in stage 5 because I can continue taking 50mg of Mino and do not, for the most part, need more than 40mg Benicar q4h. My high kidney labs and ongoing anemia tell me I am having plenty of IP where I am and so this is where I sit. Compared to the IP I was having, though, this IP is like a walk in the park.
I also suspect that I have some more intense gut and lung IP to go through yet (as I have mild COPD and had really intense lung issues when I was younger), and either I'll do it with benicar and abx or in stage 5 at some point. Hopefully before.
So I don't know; just guessing from everyone else's experience.
Regarding my recovery from the break up, I read somewhere that it takes one month for every four months of the relationship to recover. For me, that would be 2 years and one month. Though my partner was the love of my life, I think I am ahead of schedule. I dunno know...I think being disabled has taught me a thing or two about living--e.g., feeling my feelings, being in the moment, and enjoying as much as I can in this bittersweet life.
Thank you for your well wishes, Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Alayne
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Posted: Sun Jun 28th, 2009 09:34 |
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Well Claire, that calculation would give me 2 years and 1 month as well. I'm also pretty sure that I'll be ahead of schedule - big time - no matter how things turn out.
I've also been learning a few things about living. 1) Pain is inevitable, but suffering is optional. And 2) That if I don't truly acknowledge what I feel right now and don't remember to live in the moment, I miss out on a whole lot and will inevitably screw things up.
I admire your strength in the face of pain (and happiness!).
~Alayne
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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eClaire
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Posted: Wed Jul 1st, 2009 19:46 |
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Grump! I think I have a cold (only my second). What makes me think I have a cold rather than IP is that Alex, the young man living with me, woke up feeling the same way I do. What makes it worse is that I know I overdid on Sunday, which had me tiring out incredibly quickly yesterday. I'm tapped! Grump, grump, grump.
ClaireLast edited on Wed Jul 1st, 2009 19:46 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Sarah Jane
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Posted: Thu Jul 2nd, 2009 03:33 |
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Hug, hug, hug for you, Claire. Colds (IP or otherwise) are no fun. I hope it clears up quickly.
Jan, that's a lovely way to look at crafting - as phases. I've always drawn, coloured, or painted (since I figured out my opposable thumb, I'm told), so not doing any of those felt like a break from the "essential me" but looking at this as a phase is a much nicer way to view it. My jewelry phase, set to potentially include painting again at some point.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Juanita
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Posted: Thu Jul 2nd, 2009 18:38 |
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It keeps raining. And in the breaks, the heat inspires bacteria/mold/pollen to rise up from the ground and grasses. It's flattening my brain, kicking my allergies up, making me ache all over, and making me grumpy as all get out. And every time it dries up, I feel wickedly wonderful. Only to have it rain again and start the whole cycle over again.
Grrrr.
Good luck with your cold, Claire.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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eClaire
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Posted: Thu Jul 2nd, 2009 20:46 |
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Cold started getting better last night. I'm actually feeling better than Alex. Yeah Benicar! Yeah my immune system!
Juanita, Sorry to hear about the allergies. Of course, if you weren't getting rain, we'd be hearing about garden woes. Am I right? Don't you hate it when I'm right? 
Sorry. Hope the allergies die down soon.
Big hugs, Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Juanita
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Posted: Thu Jul 2nd, 2009 22:57 |
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Oh, I've got your gardening woes right here, Sugar. It's July 2nd and it's been so cold, only two blossoms on my 9 tomato plants. That's it. And the beans, squash, lettuce, spinach, sunflowers are only JUST sprouting as of the day before yesterday. The carrots have not sprouted as they like it warmer before they'll co-operate.
The garden lady who we've subscribed to for veggie boxes for the summer is supposed to bring the first box tomorrow. I have NO idea what will be in that carton. Only way she could have veggies is if she grows inside a greenhouse.
But you know what does grow? Weeds. Lots and lots of weeds.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Freddie Ash
Member
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Posted: Fri Jul 3rd, 2009 00:47 |
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HI JUANITA
This is Fred in WV. Juanita said, "IT'S JULY 2ND AND SO COLD......", what!! the goverment is telling we are having GLOBAL WARMING. Ha Ha!!! It has been cool here in WV too for us. I do hope things warm up for you so your garden can grow.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Deb Grabetz
Moderator
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Posted: Fri Jul 3rd, 2009 01:02 |
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Claire,
I noticed that too, when I've had a cold before, I hit it with the Benicar and sure enough it seems like I get through it in a much shorter time than what I have in the past. Interesting!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Joyful
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Posted: Sat Jul 11th, 2009 01:43 |
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Right now I am dealing with the mental numbness that comes from a migraine triggered by too much light in my eyes during the July 4th gathering I attended.
This means I can wear my NoIRs and keep using the computer (with low vision struggles) or I can just turn it off until tomorrow.
My soul is a caged bird. I must remember to live out of my spirit and soar to the heights unfettered by my broken body.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Juanita
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Posted: Thu Jul 16th, 2009 18:20 |
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For the caged bird sings of freedom. Maya Angelou.
We'll get there. It just takes time, eh? How are your eyes and mind now?
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Joyful
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Posted: Thu Jul 16th, 2009 20:56 |
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Thanks for asking Juanita.
Eyes still need NoIRs and that makes seeing stuff a challenge.
Mind is coming back online IF not active too long.
Still very hard work to attempt multi-step tasks.
I can answer posts that take 1-2 steps to compose... more complex stuff is hit or miss.
Still needing lots of brain rest.
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Juanita
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Posted: Thu Jul 16th, 2009 21:26 |
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That's how I feel today. I have hamburger defrosted and can't complete the thought process to decide what to make with it.
Add a touch of nausea...... and maybe dinner will be an apple and everyone else can figure out what they want to do with the beef portion that is theirs. Ha!!
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Joyful
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Posted: Thu Jul 16th, 2009 21:32 |
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I have found fear will work if it's a brain chemistry focus problem... *not desirable tho*
If my other half heads towards something I think I can do better, suddenly I can focus and complete (if not too dizzy or physically ruined at the moment). *no! I can make the popcorn!* In this case I'm afraid it won't be *done right* 
<sigh> a very sad state of affairs indeed...
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Juanita
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Posted: Thu Jul 16th, 2009 21:36 |
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So if I get frightened of my hamburger, I'll know what to make with it?
*looks at Joy* You are an interesting woman, aren't you?
I popped an extra benicar and I'm hoping that will help at least with this problem. I've come to hate brain fog. One year, okay. Two years, alright. But when it's almost a lifestyle???? Sheesh.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Joyful
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Posted: Thu Jul 16th, 2009 22:07 |
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... takes one to ... well, you know
keeps life from developing any boringness in any case.
Have you considered browning the meat in some onions and offering it up to some warmed spagetti sauce?
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Deb Grabetz
Moderator
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Posted: Thu Jul 16th, 2009 22:10 |
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Juanita wrote: That's how I feel today. I have hamburger defrosted and can't complete the thought process to decide what to make with it.
Add a touch of nausea...... and maybe dinner will be an apple and everyone else can figure out what they want to do with the beef portion that is theirs. Ha!!
Oh Juanita, isn't that the worst feeling ever? I have the hardest time explaining this to people, that I can have a task staring me in the face and can't get from point A to point B. It frazzles me, and I feel this immediate wave of exhaustion come on when I try to push to point B. Looking back, before I flared with my sarc, I did this weeks on end. Would just sit and not function, it was as if my brain was in a state of limbo.
This does seem to get better, though in time and it feels so good on the days that I really do accomplish things like I have this week.
I'm sitting here thinking about having had that same stare down myself with the hamburger package and giving it up and tossing it in the fridge, to order out!!!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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