January, 2010

GO TO SYSTEMIC FUNGAL INFECTION (Candida IgA Ab Mucosal Infection) under the

THEORIES page

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Date: July 23, 2010         Today’s Spoon Count:   4/10   (Excruciating deep thigh pain + ? arthritis-like symptoms/swelling and pain in hands, knees and hips + all other “typical fms symptoms.” ) Go to the page entitled “Managing Stress” which is under “Treatment”> “Mental Health.” There, among other things, you will find my stress type, Hypo-S, I think. Before I got sick (fms train wreck), I never noticed this description of me: extreme sensitivity to stress. However, I was ALWAYS (still am) sure to attempt to resolve conflict immediately, whether that meant an open, honest discussion with repentance, forgiveness and resolution from both parties, or it meant my inner being wearing a “BE WARE” sign 24/7, realizing that the other party involved was not to be trusted.

Since the fms hit, this phrase , extreme sensitivity to stress, is absolutely ME.  Through the years with this debilitating disorder, I’ve learned that:

1. MOST wars are not mine to fight, even those of my Loved Ones
2. saying “my piece” and letting things fall into line, WITH TRUTH BEING REVEALED by my shining light on problems.
• This usually requires that I, somehow, remove myself from the situation if there are “highers up” than me in authority refusing to deal with the conflict.  If I don’t do this almost immediately, I WILL PAY DEARLY WITH FIBRO FLARES ON TOP OF FIBRO FLARES.

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Date: June 26, 2010    Today’s Spoon Count:   6/10 (? arthritis-like symptoms/swelling and pain in hands, knees and hips)

Guai has been switched to 600mg fast acting capsules x2 daily several months ago as I AM ON Many HERBAL nutrients which can block Guai. Am hoping I am getting at least SOME benefit from the Guai with the POTENT DOSE.

I’ve added a powdered Calcium called “Calm” which has made a remarkable difference in regular, healthy bowel habits, reducing pain and ?? increasing energy/stamina. 

Have made remarkable progress:  Many days of the week, my Spoon Count is 8/10! I am currently the top listing agent and top sales”man” in our office! (Also, Office Manager and Janitor!) That means, amongst other things, that the BRAIN FOG AND PAIN have not been controlling my life! I RARELY take naps these days, work 2 (scheduled) days in the BUSY office and 1 or 2 part-days @ home! (Have come to admit that I CANNOT CLEAN THE HOUSE AND STAY UP ON ALL OTHER HOUSEHOLD CHORES AND STILL WORK! I’ve had a couple of volunteer housekeepers but, sooner or later, those kind folk bail out, don’t they?  Life is busy for all.)

We’ve added MANY NEW FARM ANIMALS (see “Beyond Disaster Survival/Country Living” pages under the “Signs of the Times” page.) My land and country living is HUGE therapy for me. However, my daily load of responsibility has HEAVILY increased. I feel overwhelmed many days which IS A BAD THING!  Need to LEARN LEARN LEARN and COMMIT TO slowing down, staying calm, and letting my body be continually nurtured instead of “burning my candle at both ends.” Today is Sabbath (see my page addressing God’s Sabbath in my life)~ it has been a fantastic learning time for this sort of lesson.

Date:  October 31, 09  Today’s Spoon Count: 6/10 (very restless night; pain increased now)

Date:  October 24, 09 Today’s Spoon Count: 8/10

Guai switched to 600 mg time release x2 daily several months ago as the capsules absorb too efficiently/symptoms become too severe for me to tolerate.

Have made remarkable progress and am usually working 2 steady days per week @ office.

Have recently made changes in my spiritual life (see Topical Study/Honoring Sabbath under God’s Word for You Today.) Time slows down for me on Sabbath, an answer to prayer to my Alpha and Omega. My worship, service, learning and being still with my LORD is precious!

During the busy week, I’m finding much more stamina to accomplish daily tasks that I’ve not been able to manage in over a decade! My husband is benefitting from this; I am blessed to bless him.

Date:  April 9, 09 Today’s Spoon Count: 4 (out of 10)

Continuing on Guaifenesin (GuaiAid fast acting capsules) 300 mg X3 daily.

My condition is rapidly worsening (I don’t believe it is Guai related at all) with my vision/balance being severely affected by ?? Something. I do seem to have some sort of eye drainage, so have been dosing myself w/ approx. 2 oz. Colloidal Silver every 2 hrs or so.  Also am using it as eye drops and has helped a bit these past few days.

Have added a new page to this website: MS (Multiple Sclerosis) as most of my symptoms are mimicking that Dreaded Disease.

THE ONLY THING DEFINITE AND CONSTANT ABOUT FIBROMYALGIA IS THAT THE DIAGNOSIS IS VAGUE AND THE SYMPTOMS ARE INCONSISTENT

April 4, 2009

MADE A SPOONS BOUQUET

TO KEEP TRACK OF MY SPOON COUNT

I found this “theory” posted on FTAlk and have actually made a “10-spoon bouquet” out of colorful pipecleaners. The bouquet will be in a central location where it’s one of the very first things I see each morning. My day will start with 10 spoons (a perfect 10) and, as I progress (ie: get out of bed, put my slippers on, etc) the # will reduce.  On Guai, I pray that the # can actually INCREASE to my biggest worry being what if I run out of NEW pipecleaners for my bouquet!

The Spoon Theory

My best friend Jenni and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. Jenni had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Jenni, here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see Jenni emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “Jenni, I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Jenni, don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
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April 2, 2009

Returned to Guai protocol, starting out with Guai-Aid (fast acting capsules) 300mg twice daily. [my bottle says it expired in ‘04 so we’ll see what happens.]

While the Dec 21 entry below gives us the impression that I’ve only been off Guai x 3 1/2 months, that’s a false inferrence. Read back to August 4, ‘08. I’VE NOT BEEN ON THE STRICT GUAI PROTOCOL FOR 8 months or more.  I think that means I divide 8 by 6 (cycle/clear 6x faster than it takes the fms to “grow” in the cells) which = 1.5 months of HELL ON EARTH and I’ll be showing signs of improvement.

Go to the ADL page to read what I posted on FTalk today regarding my condition.

HeeHaw... such is life with this life-sucking malady...

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As of this writing (December 21, ‘08), I have discontinued the Guaifenesin protocol but continue on the (fairly) strict “reactive hypoglycemia” diet that Dr. St. Amand from the www.fibromyalgiatreatmentcom website recommends.

Scroll down to my September ‘08 entry below for explanation as to why I discontinued this EXCELLENT, life-giving protocol.

Also visit the ADL (Activities of Daily Living) page attached to this Progress Notes page. I HAVE GOOD NEWS!!!

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October 31, 2008

Not good news...

I continue to deteriorate. I have become more carb sensitive, which brings on increased pain and migraines) and the fog is increasing. The fatigue is also haunting me; I’ve missed many of my scheduled work days in our office. In short, all of the fms symptoms are creeping in once again.

I had a CBC and Liver Panel done because I am bruising more than I usually do (which is a lot) and my bleeding/clotting time is messed up.  The lab tests came out normal.  I was thinking the Guai was having a hemolytic effect (I had read one report that it can do that) but apparently not.  ENTER: FMS.

Depression is rearing its ugly head and I fight to try to keep sane. Our family dog, Carmel, was recently diagnosed with terminal cancer... we have only days or weeks left with our Loved One.  The grief is deep.  While the loss of Carmel is going to haunt us for quite awhile, we can’t begin to imagine losing GoodOne.  We pray that HE WILL BE RAPTURED WITH US!  (We realize that’s not Biblical, but it’s a warm, fuzzy thought in the midst of all this agony.)

I’m also battling emotional turmoil and loss as my stepson’s wedding will soon be here... AND I WON’T BE ATTENDING.  My dh’s family are huge dragons in my life but are (almost) everything good to my “son,” so they are front and center in this wedding.  I can’t subject myself to the dragons, so I will, once again, miss out on being “Mom” to my SO VERY MUCH LOVED SON. He even called to ask me if I wanted to do the “Mother-Son dance” at the reception [this boy would rather die than dance!!!]  He promises me that when he and new bride come to visit, he’ll dance with me then.

I’ll close this entry with that saying, “I hope you dance.”  Here’s to finding GOOD STUFF in all the CRAP this earth has to offer!

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September 23, 2008

Wow, what a difference a day (or more) makes!  (See Aug 4, 2008 notation.)

Bad News: I’ve stopped the Guai for an extended period of time, maybe permanently, depending on my research/medical findings. 

I’ve discovered that Guai is bringing on migraine headache after migraine headache (3 per week!).  I’ve also noted some jaundice in the whites of my eyes and I’m bruising more. As I “read up” on side effects of LONGTERM USAGE OF GUAIFENESIN (not reported by Dr. St. Amand’s guai site, books, or lectures) from various sources (reliability of these sources not founded yet so I won’t post the websites here until I know them better), I find that “a hemolytic effect” is not rare. This means that long-term use of Guai could actually be breaking down my red blood vessels!  (Excess bleeding, jaundice, fatigue, anemia, etc.) 

To be honest with you, my suffering with debilitating fibro has been so life-sucking, that I WOULD EVEN STAY ON THE PROTOCOL IF IT MEANT IT WOULD POTENTIALLY SHORTEN MY LIFESPAN... if I could actually HAVE A LIFE WHILE ON IT!  But migraine after migraine, lying in bed trying not to vomit, IS NOT A LIFE.

And so here I am again, on the merry-go-round called “treatment search.” Pray for me, please.

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August 4, 2008

Hello, All in FibroLand!

I am even happier now than back in January, as my progress report to you is even more impressive!

We have moved to the little town in the mountains that I’ve longed to be in for 10 years!  That in itself is PROGRESS!  We were blessed to have tripped across a wonderful, Main Street-front office location and have had our Desert Lake Realty (www.desertlakerealty.com) office open there as of March 1 of this year!  I’m working 3 days a week and, most of those days, I stay upright! (When I first started working in the “downtown” office, I had to rest, almost daily, on a cot we hid in the back room!)

Besides the miraculous merciful hand of God, I attribute this rapid progress to two things:

1. The Guai was not being blocked, although I was on too high a dose (600 mg twice a day).  My ability to “go-get-um” for these past few months has really increased since I STOPPED THE GUAI (temporarily, please understand!) Sometimes, you just have to take a break from the constant cycling/clearing, especially if you are a LOW DOSE-FAST RESPONDER.  (I will return to my regular Guai Protocol regime very soon.)

2. Living in a FRIENDLY environment where gentle stimulus from smiling, interested faces is GOOD MEDICINE. I was sooooo closed off from society for the past 10 years that I truly lost a part of me.  I’m gaining that back!  Sometimes, I can feel my husband watching me through his back office window as I interact with folks from the community or new clients who come in to the office. He’s HAPPY that I’m coming alive.  I don’t know that he’s ever actually seen me (close up) IN ACTION! (We were married just 12 weeks after getting to know a bit about each other and, soon afterward, the trauma of the BLENDER FAMILY began to suck the life out of me.) I’ve not been myself for over 14 years!

Hey, I can feel ME again and I’m lovin’ it!  I think my decade of my 50’s (just had my 52nd bday!) is going to be the very best time in my life... so far anyway!

January 21, 2008

Green is for LIFE AGAIN! I am so happy to report that I’ve been back on the Guaifenesin Protocol for about 1 month after taking that long break and discovering that I WAS BLOCKING ON DR. SCHOLL’S FOOT POWDER I was using as a form of treatment for a fungal infection I had under my breasts.  IT HAD SALICILATES IN IT. How in the world my husband and I missed that on the label is beyond me. At any rate, I’m back on 600 mg compounded Guaifenesin x2 daily and it’s working!  Oh, and I’m working!!!  Yep, I’m working in my newest profession as real estate agent and LOVING IT.  I work a few mornings or a few evenings per week and I actually have the brain fog, pain and fatigue under control for those hours!  Hurray!!!!  Thank You, Jesus!

P.S. The MS tests were all negative (see below) and, once the Guai began to kick in once again, all the other “weird” symptoms went away!  I still fight the nasty Fibro Dinosaur on a daily basis, but I am feeling more alive each week!!! On the other hand, once the Guai levels balanced out in my blood, the migraines began again on at least a weekly basis.  The hypoglycemia is EXTREMELY fragile. Can’t figure that one out.

September 1, 2007

I am very sad to report that, for some unidentified reason, the Guaifenesin Protocol stopped working for me.  About one month after writing my glowing 5-yr update (below), I began to notice significant deterioration in my condition. In May, my husband and I agreed that I should stop taking the Guai and see how I did. I have continued to deteriorate. I am now showing many MS symptoms and have had a brain MRI to rule out MS (still awaiting results.) Two very good things have happened since getting off the Guaifenesin, however:  the migraines/reactive hypoglycemia have greatly diminished, and the fog is much less severe (than it was during a fms flare while on the Guai.)

I will use all of my findings/experiences to share with other researchers in an effort to FIGURE THIS STINKING DD OUT!

I pray that my situation does not dissuade you to try the Guai protocol. It gave me 5 years of a pseudo- life!!!! I will be forever and eternally grateful to Dr. St. Amand and the www.fibromyalgiatreatment.com website for that.  While I am currently trying to find out WHAT IN THE WORLD is going on with my physical condition, I have not written the Guaifenesin Protocol off forever. I might have MS, Rheumatoid Arthritis, Lupus, or even Parkinson’s Disease or something else... that doesn’t mean I DON’T HAVE FMS... and the Guaifenesin Protocol might be exactly what I still need to keep that disease at bay.

If you are a servant of the Most High Jesus Christ, King of Kings, please pray for me.

January 1, 2007

Today marks the 5th year on the Guaifenesin protocol and about the 4th year on the hg diet. I have blocked A TON (Barbie toothpaste for a long time and my herbal migraine remedies along with Excedrin Migraine [aspirin in it] used at least monthly.) I have also had to adjust my dosages and change Guaifenesin products a few times. Those situations have thrown me off schedule but I am still ONE HAPPY LADY on Guai. I've had FMS my entire life so spending the remainder of my life FEELING BETTER is a blessing indeed! If it takes the rest of my life to put fms into complete remission, so be it.

Some people might think that just recently obtaining a "handicapped parking pass" (I am smiling big about this!) or riding on the motorized cart at Costco is a sign of REGRESSION in fms. Not so at all for me. Using the parking pass allows me to WALK/SHOP THE ENTIRE MALL or grocery store instead of giving my energy to dragging myself around a cold, slippery parking lot! The "go-cart" is just that: it allows me to GO GO GO in Costco, something I've not been able to do in years. The torturous cement floors and the noise and chaos and loooonnnnggg check-out lines... well... just the whole atmosphere used to suck the energy right out of me. With the "go cart" I can keep up with dh and daughter!

The brain fog and vision are greatly improved; the prescription glasses I got a couple of years ago that the DR had an impossible time fitting me for thanks to the eye changes (sometimes in minutes) with fms are now actually usable some days! (I have progressive lenses making walking a dizzying experience!) The brain is clearing so wonderfully that I am about 1/5 the way thru my REAL ESTATE CLASSES. That is a miracle! Of course, creating and managing Bitterman’s Banners is a wonderful challenge and an excellent measuring tool of progress made!

I have returned to substitute teaching on a very limited basis but I think dh and I have decided the "payoff" is way too small considering the effort I put forth. Besides, our granddaughter has just been identified as Special Ed and more neurological testing to follow might show some significant learning deficits. If that's the case, my Special Ed expertise will come into great use. A few years ago, I didn't know which end was up let alone teach anybody else anything!

I MYSELF have trained 3 service dogs (having a service dog provides MUCH INDEPENDENCE) in the past 3 years and have discovered other treatments complimentary to the Guai protocol/hg diet. Please write me for more info.

Thank God for Guai!
 

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