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Archive for the ‘fibromyalgia’ Category

On November 15, 2005, I started on the guaifenesin protocol to reverse my fibromyalgia.  Often we are too busy with harvest & the fall work for me to even notice the day go by let alone think or write about it.  But this year, I did note the date and decided to just put up a short blog post about it.

Nine years!  I have my life back in regards to my pain level and fatigue and that is worth the rules of the protocol.  Yes, I have other diagonoses but this post only concerns my fibromyalgia & chronic fatigue diagonosis.

Short reminder… Nine years ago, we were looking to buy a wheelchair for me, in my size, with only my cooties on it.  My kids were both at home yet, one did my driving, and they would argue in Target over who would get to push me.  I couldn’t walk the grocery store and barely made it to a back row seat at church hanging onto K’s arm.  K was working but lived at home.  She planned our meals and if she didn’t work the early morning shift, she would start our lunch prep before she left for work.  I spent the days on the couch vs the bed so that JP would visually see that he had a mom.   I was 42 and going no where.

Now there is no wheelchair and no need for one!  I try to do aqua aerobics 2 times a week and some days at home I do yoga with a DVD or Amazon or such.  And if it makes any sense, I can do a whole session of a Jillian Michael’s Yoga Meltdown.  I challenge you!  Of course, I’m the one running the kitchen, hauling in groceries, and cooking all the meals here.  And all the other stuff you read here on the blog.

I do not give 2 hour replies via email or phone for those that think I’m crazy doing this and want to chit-chat.  I have a lot going on and have learned to not waste my breath.  🙂

But if you’ve gotten this far, here are my suggestions:

*Buy the book and read it all.  (yes, I know you have fibrofog, so did I.)   What Your Doctor May NOT Tell You About Fibromyalgia by Dr. Paul St. Amand & Claudia Marek — only get the 2012 edition!!
*Read the website.  (fibromyalgiatreatment.com)  The heading has FTC – Spreading Hope.  You are ill- not crazy!
*Subscribe to the archaic listserve and get the emails in one chunk to your box.  It is usually 1 email a day but sometimes a few more.  At the bottom of the page I linked, click on the “subscribe guai group” link.

The guai protocol is not a sprint (done in 2 days) but a marathon.  Like a person takes blood pressure medicine every day, so I take my guai every day.  It is not a normal medical route that you take a pill and all is well.  There are rules.  You can follow the rules and get better or not.   They aren’t guidelines; they are rules.  In a nutshell, one has to watch what is used on your skin (shampoo, lotion, makeup, deodorant, soap, toothpaste, etc).  But you don’t learn that from that previous sentence, you learn it from the website and the book.

It is SO much easier to follow this now than it was when I started 9 years ago.  They continually learn and make it easier.  My PCP is quite pleased with my treatment; she knows about it enough that she supports me and knows that many aren’t diligent enough to accomplish this.

If you still interested and going to give guaifenesin a try for your fibromyalgia, I will help you. Any thing you need.  I’ll help you scan your products.  I’ll email with you.  I’ll even go shopping with you. But you have to be willing to learn about it, follow the rules, and give it time.  🙂

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Prep for GAPS

I’ve known about the GAPS diet for several years and with several promptings and some learning, I am about to try it for myself.  I have several reasons but a big one is that while I’ve had great improvement from the HG eating plan I’m on along with my fibromyalgia treatment (which now I really don’t have FM symptoms anymore!!  🙂  ), I feel that after 6 years of this eating plan, I should be much better in regards to my blood sugar issues and not so sensitive.

I’ve done a lot of reading and gotten good help from a few friends that have either tried it or are on it now.

GAPS diet website

Help for getting started and for recipes  I’m also getting her daily emails & using her 30-day ebook.  Quite helpful!

Last week I worked on getting some food ready for me.    I made:

  • 6 quarts of chicken stock
  • 6 quarts of beef stock
  • 10 or so bags (indv servings) of chicken
  • 13 bags of roast beef
  • homemade sour cream (verdict is still out)
  • homemade sauerkraut (still sitting)

I think that because I’ve been carb-free and sugar-free already that I’ll move quickly through the first few phases.  And my hope in the long-run is that I’ll be healthier/better for doing this and will be able to eat more at the end of GAPS than I can now on my HG eating plan.

Here’s to a cup of broth… CHEERS!

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I made this for the first time for Thanksgiving and we just LOVE it!  I made it again for Christmas.  Tonight I made it just because I need it around.   🙂

The official name & recipe:

Green Bean Dish

1 1/2 pounds french-style green beans

8 slices bacon

1 cup sweet onion (OK to use green onions = less sugars)

2/3 c heavy cream

3/4 tsp salt

1/4 tsp thyme

1/2 tsp pepper

4 heaping tablespoons grated parmesan cheese (the real stuff!!)

2 tablespoons butter

Bring a pot of water to boil, add beans, and simmer until just barely tender.  Drain and rinse with cold water and set aside.

Fry bacon until browned.  Set aside to drain on paper towels.  When bacon is cooled, break up into half-inch pieces.  Saute onions in bacon grease until tender and then drain off grease.

Put beans along with onions and bacon in a 1 1/2 quart casserole dish.  Add spices to cream and pour over bean mixture.  Top with parmesan cheese and dot with butter.  Bake at 350′ F until lightly browned, about 20 – 25 minutes.

My notes:

  • I cut the raw bacon up with scissors and cook it ahead of time.  Then I just put in a few handfuls or whatever looks good at the moment.  Then I saute the onions in some olive oil so they are ready to use.
  • The onions are optional but we like them.   Bacon is not optional in this house!  😉
  • I’d suggest mixing the beans, onions, bacon, seasonings, and cream in a bowl so the seasonings get well mixed.  Then pour into a casserole dish, sprinkle with cheese and dot with butter.  You can also stir all that into the bowl together.
  • This works to assemble the day ahead and bake when you are ready.

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5th Guai-versary!

Monday, November 15th, was my 5th year anniversary of reversing my fibromyalgia with guaifenesin.  HERE is the website with info.

I plan to write up a progress report every year.  And every year I’m too busy.  What does that say?  🙂

If you read very far back in my blog, you know I don’t let much grass grow under me.   I have so much to do and seriously there aren’t enough hours in a day.  🙂   A far, far, cry from my life 5 yrs ago.

That was sad.  I was in my early 40’s and we were looking to buy a wheelchair for me.  We had borrowed one for our little vacation of sorts that summer of 2005 so I could at least go with the others.  But it was old and not my size and just cumbersome.   I had to use the store wheelchair at Target & such places.  The kids would argue over who got to push me.  Now, that is a sad place to be!

But my legs were like cement and they didn’t move.  I had fatigue that required 2 naps a day and I slept all night as well.  If I did awaken during the night, it was too hard to get up and move to the living room couch so Phil got me a small TV for the bedroom that I could watch during the night.   I wasn’t able to walk through the grocery store so most of the time K got our groceries after her job in that town.  She had usually planned the meals and made the grocery list too as even those jobs had become too difficult for me.

The guaifenesin treatment is a slow process and one that the patient has to take responsiblitly for following.  There are rules to follow and if you don’t want to watch the ingredients in products you use on your skin or brush your teeth with then you set yourself up for failure right away.

But if you choose to be salicylate-free and follow the dosing step-ups as directed on the website, you will get better.  It is so amazing!  I only write occasionally about my Fibromyalgia because it doesn’t affect much of my life anymore.  But if you click on the Fibromyalgia category on the right side bar, you’ll find a few other blog posts on it.

Now I do all the care for the house & meals, tho anyone is welcome to do a load of laundry or dishes!  😉   But I also live such an active life.  I’m a busy quilter and looking to expand those levels in the new year.  I am happy to be able to attend church weekly and my weekly Bible Study.  I drive to visit my parents in Ohio and make the trip solo most times.   I do water aerobics twice a week and aim to do a Jillian Michael’s workout here at home 4 days a week.   (that doesn’t always happen because I have too many other jobs calling for me)

My hardest thing is the eating.  About 40% of those with Fibromyalgia are hypoglycemic and I am one of them.   I follow the HG eating plan that Dr. Paul St. Amand has written and tested.  I keep mostly to the strict side but can have some of the vegetables on the liberal side.  I also have a piece of sugar-free whole grain bread occasionally for a treat.  When I cheat on the eating plan (including eating chicken at a restaurant as they soak it in sugar solution…. dumb!), I get an upset stomach, a headache follows a bit later, and the next day I’m fatigued and sluggish.   It is impossible for me to find a safe meal out to eat and I miss that.  I’m sick of cooking but I have to do it.  There aren’t short-cuts and I have other things I’d rather be doing than spending time in my kitchen.

I’m so thankful that I decided to try the guai 5 years ago when I read about it.  I had tried so many other “cures” and come up dry and poorer every time.  This works!

  • I love that I can do this without my physician’s approval.  (tho she is thrilled with my progress!)
  • While I do take a dye-free formula via  a prescription, the medicine is available over the counter!
  • No one is making money off of me following this protocol except the store where I chose to buy my guai.  There are no paybacks or multi-level marketing at play here.
  • Those who wrote the treatment program have fibromyalgia themselves.  They know the pain.  The fatigue.  The fog.   They’ve been in our shoes!

I now help others get started on the guai protocol.  I’ve learned that just because someone has FM and asks about it doesn’t mean they are going to follow it.  I offer information and help and more help if they ask.   I help because I have my life back.  I had to do this alone and learn it myself midst the fog.  I’m very willing to help others get started.

My sadness with the FM is knowing others that are diagnosed with the disease and know about the treatment and how much I’ve improved and still refuse to look into it.  Why?  Do you like the pain?  Is there attention there?  Don’t you want your mind back?  Your energy?  Your strength?   You can have it back with guai.  It takes time but it works.  You didn’t get this sick overnight and you won’t be better overnight.  But for me, my 42 years of building up are nearly clear in just 5 years.  What a blessing!

I’ve come to the point of being thankful that my disease is fibromyalgia.  I have been able to reverse it and get my life back!  That doesn’t happen with so many of the similar diseases I was tested for in the early days.

I don’t have fancy pictures to go with this post so thanks for reading along if you’ve come this far.

Here…

This is me ending my ride on the slip & slide! In the mud!

 

Five years ago I couldn’t have gone to my family reunion in Ohio with such ease.  I couldn’t have walked up this hill.   I couldn’t have done the slip & slide back down & been able to walk the next day!   It was a 100′ slip & slide.  Obviously, we all went farther.   It was fun!  🙂

Guai works!  If you have fibromyalgia, what are you waiting for?

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This quote from the co-author of the Fibro book —

It’s hard work being sick and it’s hard work getting well.  We would rather be putting our energy toward getting well, not sicker.

AMEN!!

What Your Doctor May NOT Tell You About Fibromyalgia by Dr. Paul St. Amand & Claudia Marek

Available from amazon, your local bookseller, or this website.

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Sore Shoulder…

I’ve had an issue with my (mostly) right shoulder since the end of January.  It didn’t help that my massage therapist (MT) had ruptured a disc in her neck  and was out for a while.

After about 2 1/2 weeks, it dawned on me… that I didn’t injure it, nothing makes it worse, not much made it better.  I couldn’t place the root of the problem.. until…. I finally remembered if I can’t find a source, no rhyme or reason, how about fibro?  At that point, I remembered that the support group I read via email has said that the neck & shoulders clear last and are painful!  Maybe I’m in a bad fibro cycle!  It feels a lot like the summer & fall of ’05 before I started on guai.  Just not as bad as then.

Well, I sure felt the painful part!  I can’t really remember the last painful cycle as I just don’t have them much anymore.   To blame the pain on a cycle and to have a glimmer of hope of this ending, really helped.

{I speak of a cycle of clearing out the phosphates that led to my fibromyalgia and chronic fatigue syndrome.    I follow the guaifenesin protocol for reversing my fibromyalgia.  I have been reversing for 4 yrs and 3 months.  Going by the general estimates, I should be clear in 7 1/2 yrs.  (A little over 3 more years!)  However, I have been ahead of the clearing schedule many times and I take extra guai to help clear faster.  So… in reality, I could be nearing the end!! 🙂 }

Finally, I was able to see my MT on Tuesday.  She spent most of my hour doing some stretches for my myofascial layer and helping level out my hips & shoulders.  I’m wonky!

But I didn’t feel better on Wednesday or Thursday so I called my MT to ask for a 30 min session to work on my shoulders.  I went for that this afternoon.

At one point she worked at slowly lining up my shoulders so my left one isn’t so high and my right one isn’t so very low.  I felt all wonky…. and by then I was nearing level.  :\   Funny how ones body adjusts to wonky.  *sigh*

And then it hit me.  My drumming days in high school.  I could be reversed back that far at this point.  And I injured my right shoulder carrying my snare drum back in the day.

{I did the math…  I could be cleared back to age 16 1/2 if I am on the general schedule. }

My sophomore year of band, we got new drums.  The new ones had steel frames and were much heavier than the ancient wooden framed drums we had been using.   It didn’t take too many weeks before my shoulder was injured so much I couldn’t carry a drum anymore.  The strap was only on the right side.  The drum hung diagonally and rode on our left leg.  Oh those thigh bruises… 😦  I ended up finishing out my marching band years by playing a glockenspiel.

And so, there I am.  A little less soaping, quilting, blogging, and fun.  A lot more resting.

I’m thankful that I hardly ever have pain in my clearing anymore.  This last month has reminded me of how good the days have been.  I’m glad I’m getting beyond most of this.  And I’m anxious for this cycle to end.  I work slower and with less energy as this works out of my body.  I was so used to the fast pace!  🙂

But even though this shoulder has been bothering me, I have kept up with working out with my Jillian Michaels’ Shred DVD nearly everyday.  I’m at level 2.  If this shoulder hadn’t flared up this week again, I was going to move to level 3.  And I still go to swim 2x a week.  I’m enjoying going during free swim instead of during class time for a few weeks and have avoided a lot of crowd that way!

I have added in some e-cises.  I did these before I started guai when my shoulder was so very painful.  They really help with aligning my body and putting it back in the position it needs.

I’m going to rest on the couch with an ice pack now.  I hate ice!! 😦  And later, after Phil comes in, I’ll look for a band picture to share with you.  I sure wish we would have taken more candid pictures when I was a kid like we do now.

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I’m thankful!

I don’t post much about my fibromyalgia because it just doesn’t hold me down much anymore.  🙂  Let me tell you about yesterday.

I had my usual day of some sewing mixed in with the rest of the day.  Up & down the basement steps a few times.  Made dinner.  Did some laundry.  Stuff.

I left at 2:45 p.m. for the rest of the day.  First took Phil to pick up his tractor.  (you know just driving 4 yrs ago was a problem for me!)  Then on to Menard’s (priced front & back doors) and Joann’s (they had 2 of the 3 things I needed).

Got to the fitness center and did 1/2 hr of weights, getting stronger and upping the weights on a regular basis.  Then 50 mins of aqua aerobics in the pool.  I started a bit early and there are those of us (veterans) that push the envelope a bit more and do more aerobics than this new teacher.

After that it was time for groceries.  But because I’m feeling better, I had lists for 3 stores.  The majority came from Cubs, then milk from Aldi’s (it is 1/2 the price of the other store!), and then Save A Lot to finish since they are the only store with sugar-free boneless skinless chicken.

I got home at 7 p.m. and JP helped me unload the truck and I put the groceries away.  Thankfully JP had grilled the brats so I could then eat.  🙂

This is my new life!  I’m nearing 4 yrs of reversing my fibromyalgia with guaifenesin. Take that you nay-sayers!  🙂

Wednesday… just finished my 3rd time of doing Jillian Michaels’ 30 day Shred workout.  Good workout.  I think it might be helping!!  🙂

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One on the guaifenesin support group was struggling today.   She is just a ‘toddler’ in the stages of reversal so I posted this to encourage her & others.   Thought I’d share with you as I know I don’t post much about my fibromyalgia.  

Shirley, it is OK to vent! We’ve walked in your shoes. Or not wanted to walk as well! ((hugs))

Today as I was out scraping frozen and packed snow off my driveway, I was so excited!! Three years ago it was difficult to walk to the bathroom.

When we went to church, dh dropped us off at the door. I HUNG onto dd’s arm and she led me to a seat immediately. I couldn’t stand when others would stand. After that was over, I’d lean to get back out to the car.

My legs felt like cement and sometimes I had to pick them up with my hands to change their position when I was sitting.

So today I shoveled snow. 
Then I walked a bag of heavy garbage to the dumpster. 
Then I wandered around the loop on our farm looking for my dh. 
I found him and we walked to the barn. I approved the play area he built out of straw bales and misc boards for our new puppy that is coming home today. 🙂
I walked up the icy, snow-packed hill to the house.  (and didn’t fall!  😀 )

Guai works!  

 

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Three years + 2 months

My 3 year anniversary in November 2008 came when I was too busy to stop and write a report.   I was at my clearing dose on November 15, 2005 and this is how far I’ve come!

I just commented the other day that this is the best January I’ve ever had.  No big let-down after the holidays and no big yucky winter mood either.   I’m busy working my business of home made soaps and busy in my in between hours with quilting.  

Three plus years ago, I was barely functioning.  I moved from the bed to the couch so my kids could see they had a mom.   Our daughter did most of the grocery shopping and cooking.  I wasn’t able to walk a store and my kids would argue over who got to push me around in the wheelchair.   I drove short distances but didn’t trust myself.  Sometimes I wasn’t sure how to get where I needed to go and other times arrived somewhere not knowing why I was there. 

Now I take care of the house, family, and get the groceries.    I have stepped up my soap business and have been working that a lot more.  I am back to enjoying my sewing and quilting time, too.  I love having my mind back and I’m sure my family does too.  I go to an aqua aerobics class twice a week.  

I love how much thicker, fuller, and curlier my hair got in just the first few months on guai.   My skin is healthier as well.   It feels good when others tell me how good I look.   🙂  

I retire this spring as our son graduates from our homeschool in May.  But I have plenty to keep doing with building my soaping business and keeping up with Phil.   I am also President of our quilt guild this year.   Last year as VP and this year have added a lot of activity and responsibility to my mind.  

How do I really describe how much better I am?  You could ask my mom.   🙂 It is great when my family sees how much better I am with the guai.   I think if you would meet me and not know that I have fibromyalgia, you wouldn’t guess it.   

I cleared a ton of depression out over these years on guai and I’m happier than I ever have been.   Even during the midwest winter!   Here & there I can pinpoint a specific area of clearing and count it back to an event.   I’ve cleared deposits from 3 of my 4 pregnancies and each one is easier than the last.  

If I overdo it or have a lot of stress the first thing that hits me back is the fatigue.  I end up taking afternoon naps for a few days and am back to my normal.  

I follow the HG eating plan.  I stay on strict even tho I don’t lose weight on it.  I get reactions when I eat 2 or more items on the liberal side so those things are only for a cheat here & there.  

I clear at 1200 mg a day but bump it up with 400 FA when I can to clear faster.   With the FA added, I also have less itching.  But I learned to take my FA in the morning as it gives me energy.  🙂

When I started guai, I had about 7 1/2 yrs to totally clear.  Sometimes I calculate that I’m a bit ahead of normal and other times right on.  That is so encouraging to me.   But being this good at 1/2 way done is super for me!

Currently I’m cycling issues with my feet and low back but it only causes me to pause for twice daily MSM cream applications.  Otherwise, I keep going!  (with my shoes on!)

I’m so thankful to the friend who lent me her WYDWTYAF book!  (At the time, I was actually frustrated by well-meaning folk that had advice and books out my eyeballs for me.   What a difference the RIGHT book made!)  But mostly I’m thankful to Dr. St. Amand & Claudia for their work, the guai group members & admins for their help, and for the MI conference in 07.  It was a treat to be able to make that trip but also to meet Claudia, Cris, Gretchen, & Char.   Thank you all!!  🙂

The guaifenesin protocol has been a miracle to me!

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Welcome!

I’m so glad you found me here in my new blog home.   Please leave a comment and let me know you found me here.  {What is super cool is that with Word Press, if you don’t have an avatar registered with them, your avatar for me will be a quilt block.  😀  }

I’m still in a bit of recovery mode from the weekend and last night’s quilt guild meeting but my goal is to have fabric dyeing pictures up by Wednesday.   Bear in mind, the to-do list has soapmaking and lotion making on it as well.  

Phil is busy with corn and JP helps out when he can.  JP is helping Gpa move a load now and will finish his Math for today when he gets back.   K is at Hatmaking class today, has an RA sponsored program tonight (“Avoiding the SAIC Cold” 😉 ), and a staff meeting late tonight.   

K – your box is “in the mail”! 😀

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