Happy New Year!

Oh my gosh how time gets away from me!  I'm sorry to have just up and left you here without an update or anything!  So much has been going on so let's get started with this update!

Since my last update I've had a couple more Dr appointments and continue to have a lower dose of Synthroid.  I'm now on 112 mg/day.  Honestly, I can't tell any difference from 150 mg to now but apparently my TSH is still not in the right range.

In other news, I decided around the holidays to go back to school this year.  I started on Jan 5th and am almost done with my first class.  I'm doing an online program to get my Bachelors degree in Social and Criminal Justice.  I've always been interested in this field so I figured why not!  It seemed like a good time to get started with most all of my health issues "under control" at this point, or should I say for now.

My FMS has been relatively "laying low" if you will.  Now I say this only because I can compare what I previously had to deal with to now.  Don't get me wrong, I still have my good days and bad days, but they are nothing compared to what I use to deal with.  I still have a pretty high level of fatigue which I don't think I'll ever not have to deal with.  Aches and pains, they come and go but are at a level that is manageable on a day to day basis.  My hips tend to give me the most trouble with consistent pain and my guts are often "upset".  I'm sure a lot of this sounds all too familiar to many who deal with the curse of chronic illness(es).

The most recent flare I've had to deal with is the tendon in my right arm flared up.  Literally I was fine the night before and woke up with this pain that was pretty intense going from my hand to my elbow and especially worse with certain movements. This was terrible as I'm right handed and couldn't do anything that required lifting or twisting.  Even lifting just a bottle of Gatorade was impossible for weeks.  I had my chiropractor treat me using a technique called "Graston" - if you have never heard of it, click HERE to read about it.  It's a strange kind of therapy but it works every time!  I've had it done several times for different issues and each time it's solved the problem.  With my arm, I had 2 sessions and the pain was noticeably less.  Today, I have no pain in that area.

Speaking about chiropractors, I need to mention that at the end of the year I realized I had not been into my primary physician's office in an entire year!  That was something to celebrate as it's just unheard of with all the health issues I've had to deal with.  Other than my Endocrinologist dealing with my thyroid, I didn't need to see an MD for any kind of illness for an entire year .... and still going!  I did however, see my chiropractor anywhere from 2x a week to 1x a month just depending on my needs and what was going on.  I firmly believe in and highly recommend alternative treatments for people like us with chronic conditions.  From the research I've done, alternative therapy is the way to go for managing these chronic illnesses that aren't necessarily seen as true illness.  Those of us who deal with them day in and day out know otherwise.

When asked what I've done to "make yourself better" I can't really pinpoint just one thing.  It's been a long road of recovery to get to the point I'm at today.  Feeling good with occasional flares. listening to my body, taking time to do nothing when I need to, the right mixture of nutrients, protein, and therapy all play a role in healing the body and getting you to a good functioning state of being.  I spent a lot of time researching and trying different methods until I started seeing good results.  It's a hard long road but at the end of it the results are better health and an overall better quality of life.  I know that at any moment I could crumple to the floor in pain and deal with that for an undetermined amount of time, but for the time being I will enjoy where I am with my health.

Like many people who deal with chronic illness, I belong to several online support groups.  It gets hard to read everyone's postings about how terrible they are doing.  In more cases than not, it's usually money that stops people from getting the help and treatment they need to feel better and be a contributing member of their community.  So the cycle just continues, day in and day out so many people are suffering.  My hope is still what it was when I first started this blog, that if I can help even just one person find a path to getting themselves to a better state of health, then I've succeeded in my mission.

I hope the New Year has found you well and that you are finding ways to manage in your day to day life.  Whether you suffer from chronic illness or a loved one does, I encourage you to look back through my postings and try new things in an effort to feel better.

My vow to you today is that I will try to do better with my updates - I just get so busy in life that I forget to come post updates.  I will make a conscious effort to update at least 1x a month if not more!

Until next time....to your health!

My thyroid numbers and medicine changes

First, let me start off by saying how great I've been feeling!  I think having my thyroid removed is a huge part of why I'm feeling so great!  For years I had a suspicion that a good majority of my medical issues were because of a faulty thyroid - even though the blood work always came back "fine" I knew things were not "fine" and now that I have been without my thyroid for a good 2 months I really believe that the be the case.

After my surgery, I started on 150 mg of Synthroid.  I had my blood drawn on Aug 8th and it came back with a low TSH of 0.028 - the normal range is 0.0450-4.5000 so my Dr lowered my dose to 137 mg.  What I find most interesting though is that my other numbers are significantly higher than they have ever been.  Prior to my surgery and going on the medication my numbers were always in the low range of normal.

Before my surgery, my numbers were:

TSH - 0.749 (within the normal range)
T4 or Thyroxine - 5.4
T3 Uptake - 30
Free T4 1.6

My most recent numbers show improvement and I'm sure why I feel so much better:

TSH - 0.028 (according to my Dr, the number being so low means I have high thyroid hormone which could cause heart problems and why she wanted to lower my medication dose)
T4 -9.8 (up significantly since starting thyroid medication)
T3 Uptake - 34
Free T4 - 3.3

You will see an increase in all the hormones which makes me even more certain that the lower numbers were causing much of my fatigue, fibromyalgia pain and overall lack of being healthy in general.  I would argue with anyone who says otherwise considering that it's the only thing that has changed in my life and the result is me feeling like a "normal" person most of the time now.

I will go in and have my numbers checked again later this month or early October to see how the medication adjustment has changed the numbers.  I was really worried that dropping the dose of my medication would significantly effect me but so far things seem fine.

On another note, I've lost 18 lbs in the last 3 months.  I'm on a mission to lose another 40 to get back to where I was before getting sick.  With the new found energy I have, I'm able to get myself to the gym a few days a week to lift weights.  I'm really pleased with the changes that I'm starting to see overall.

That's it for this update - I just wanted to be sure to update my numbers and share my success thus far since Surgery - it's really just been about 9 weeks since the surgery but so far everything is going really good.

Until next time - to your health!

Three weeks post surgery, no changes

Hello!

Well here I am 3 wks post surgery and really, I don't feel like there has been any change in how I feel. I realize it takes time so I'm hopeful.  I have a follow up with my endocrine the first week in August for another blood test to see how my levels look.

I just finished a very busy week with my daughter and her High School volleyball team.  We had two big camps we attended.  It was busy and I'm glad it's done.  This next week doesn't have many plans which I'm glad about - time to rest up!  The following week will be another busy one with another volleyball camp and a trip to California to see my family.  I'm the only one going and it will be a nice break/vacation before school starts again, which means I go back to work.

While my blog has mostly been about Fibromyalgia I am going to start including some things on Thyroid disease and hypothyroidism.  I think there are links between the two.  So as I get information I'll be including it here in link and just general information.

I don't really have a lot to report right now......I'm healing well from my surgery and hoping to see some changes as time goes on.  I'm currently on a 150mg dose of Synthroid which I'm beginning to wonder if it's too low since I'm really not seeing any kind of difference in how I feel overall.  I know that this particular medication is a T4 replacement and I wonder about the T3 - something to ask the dr and do a little research on.  I know Amour is another medication that replaces both the T4 and T3 so we'll see.

Until next time - to your health!

Gerri

Thyroid Surgery, Synthroid, Recovery and more......

Hello!  I'm here, alive and doing pretty well!  Had my surgery on June 26th which I want to share that experience with everyone......

Surgery took about 3 hrs - apparently my thyroid growths were pretty big, bigger than the Dr expected and growing down into my chest!  That was a surprise when he told us that!  Clearly a good thing I went with the surgery to get it removed.  Pain after surgery was pretty high mostly inside my throat and upper chest - it hurt pretty bad - the incision itself didn't really bother me though.  It was swallowing and taking a deep breathe that I struggled with.  The Dr had told me to expect some pain in my throat due to the large breathing tube they use in order to monitor the nerves to the vocal cord.  So the pain wasn't a surprise really but the amount of time I've had it has been.  I'm almost 2 wks out from surgery and my throat still hurts to a degree.  Not nearly as bad as it did but it still hurts when I swallow.  Hoping that goes away in the next week.  I have my follow up on Thursday the 9th (tomorrow).

The day after surgery I started on Synthroid, the hormone to replace the thyroid function which I'll be on for life.  So far I suppose it's working, I don't feel any ill effects or any good effects for that matter....I feel fine really.  I'm hoping I don't have any issues with the dosage - they started me on 150mg which I was told was the normal starting dose based on weight.  I suppose if I lose weight, which is my intention, they may have to adjust the dosage.

So all in all, not a lot to report with surgery, recovery has been good, I've just been taking it easy and resting a lot and as I feel I need to.

I'm hoping my energy levels improve but so far I haven't noticed much of a difference.  As I continue to recover and go on in life without my thyroid I'm hoping that things change in the area of my energy and that I get more of it.......I've lived so long with this chronic fatigue and low energy/metabolism I am really looking forward to possibly having better energy and a faster metabolism but we'll see.  While in the hospital I also found out that I still have low Vitamin D levels, so I'm going to start taking that supplement again to improve in that area which could also help with the energy.

To be honest, I'm so very tired of having all these "issues".  At times I wonder if I really have all the things the Dr's have told me I have - Fibromyalgia, Chronic Fatigue, Lupus......All the symptoms for each really go hand in hand and cross over one another that I find it hard to believe sometimes......are my diagnosis really that or just because the Dr's couldn't figure out why I have the issues I have had.  I know I have Lupus as the blood test came back positive for that and I have the tell-tell signs of it.

Now, in addition to continuing to heal, I'm on a mission to lose this weight I've put on.  I've started back on the Body By Vi program, you can check it out here - Body by Visalus - It's really helpful with controlling hunger and providing the nutrients our bodies need to keep us healthy and strong.  I like it because I can drink a shake for breakfast which I usually skip anyway.  It's a great program if you want to start a challenge, please check it out and let me know - you can win money and with every 10lbs you lose you also help a child in need.  The program is fantastic and you get tons of support!  Since starting on the challenge 23 days ago I've already lost 9lbs!!

Everyday is still a challenge and I'm not sure what to expect.  One day I'm great and the next I'm feeling sick.  Yesterday was a day full of nausea and just not feeling well.  I've also developed some issues in my gut causing me to stay close to the bathroom most of the time.

That's about all I can give you for an update - I'll post again soon as I continue to heal and become the better version of myself.

Until then....To your health!

Gerri

More on Teeth, Thyroid surgery

Hello everyone!

I have some updates for you since my last post (note that I'm really trying to stay on top of this blog! Today is May 3rd.....) Just a small victory in my world of many set backs!

So for starters, I got my new crown placed - that was all great but the dentist informed me that I still need a lot of work in my mouth - 3 crown replacements and one of my molars has a crack and needs a filling.  My priority is dealing with the cracked molar so I don't end up losing it too!  That appointment has been made although now that I'm looking for the date I don't see it on my calendar so I'll need to call and make sure I really made the appointment.  Gotta love the fibro brain!

I saw the surgeon on Thursday last week.  He said because one of my many goiters is 6 cm in size, very large for a goiter, the thyroid should come out.  He explained that with goiters 4cm and larger they automatically want to take it out due to increased risk of cancer.  He said even though my biopsies have been benign, there still is the chance of having cancer cells that either were not captured or will develop.  He followed that up with telling me that those cancer cells may never do anything but they prefer to get rid of any potential of having cancer.  I agree with that!  We discussed what that means for me - basically taking a pill everyday for life, a scar on the base of my neck and possible issues with calcium which would be treated with high doses of calcium.  He did discuss with me the possible risk of vocal cord issues or voice box issues to which he said the risk is only about 1% and usually temporary in nature. He said it doesn't mean my voice would be lost but that I would have a hoarse sounding voice for an unknown length of time that generally fixes itself unless there is nerve damage.  Hospital stay over night and potentially a drain for a week.  He said the drain will help fluids that might want to accumulate due to the large vacancy that will be left from the 6cm goiter.

So I have that surgery scheduled for June 26th.  Due to the continued growth of goiters on the thyroid I feel my best option is to remove it to stop the growths.  Taking a pill forever is an easy fix and I won't have to deal with the painful biopsies every year anymore.

According to research, there is a link between fibromyalgia and thyroid problems.  There are a lot of thyroid diseases so I personally find it hard to make the connection especially if the hormones are within a normal range when tested.  I have tried for years to tell my endocrinologist that I think I have hypothyroidism but she insists that my blood work proves otherwise because all my numbers fall within the "normal" range.

(Note that I started writing this on May 3rd, today I am finishing it and it's June 23rd - I guess my quest to stay on top of it kind of failed with end of the school year and summer coming upon us....but hey, at least I came back to it!)

So back to those Normal ranges.  Since I wrote the above, I had another blood test to check my numbers - the following information is what I was given.

The blood tests ordered were TSH, Thyroxine (T4), T3 uptake

• TSH - 0.749 (Normal ranges for this lab - 0.450-4.500) I'm barely above normal 
• Thyroxine (T4) - 5.4 (normal ranges 4.5-12.0) This one is low 
• T3 uptake - 30 (normal ranges 24-39) This one seems OK 
• Free T4 1.6 (normal ranges 1.2-4.9)  This one again, just above the normal zone

Does anyone notice something with my numbers?  The first thing I thought was that my numbers, while "normal" are very, very much on the lowest end of normal.  This could explain and account for a lot of health problems and general issues I deal with daily!  

I'm pretty nervous as I approach my surgery.  Today the hospital called with details for the day of - I have to arrive at the hospital to check in at 5:30 am and the surgery is scheduled for 7:30 am.  I'll be there over night and as long as everything is good they will let me go home the next day.

I just really hope everything goes well and that I don't have any issues with my thyroid levels after all is said and done.  I'm hoping the meds they put me on will raise the low numbers - that would mean the Dr will have to prescribe me the "right" dose from the beginning.....praying for that!

I want to go back to the numbers real quick.  Each lab has a different "normal" range for those thyroid numbers.  So out of curiosity, I went and searched on google for normal thyroid numbers and found that is could vary from 0.3 to 5.0 and anywhere in between as "normal".....my immediate question is "normal for WHO?"  Not me, that's for sure!  I would be willing to put money down that if my low numbers were raised I would notice a huge difference in how I feel on a regular basis, day to day.........

Enough thyroid talk, school was done June 4th for me, the kids were out a week before that.  My daughter took a little over a week to spend with her auntie and grandma (she calls her "bacca" and it really doesn't mean anything, the kids made it up when they were babies) in California.  She had pictures done for her birthday and enjoyed being with the family.  

Ryan went to a spring football camp with his high school and enjoyed that.  He is in strength/conditioning through the summer through his school as well.  Come fall he will hopefully be playing a little football!  I just run the kids back and forth anymore :)

Taylor turned 16 on June 8th, that same day she got her driver permit and a job as a cashier at Wal-Mart.  She is playing volleyball 3 hours a day as well right now getting ready for upcoming team camps she will be participating in for the rest of the summer.

BUSY is an understatement for our little family but it's good this way, keeps us all out of trouble ;)

So as I approach my surgery I want to wish you well and please send me a little extra positive thoughts and visions of healing fast.  

Until next time......(I will try to post an update on my surgery as soonas I can!)

Gerri :)

A plea for HELP! Thyroid update and my teeth.....

So a lot has happened since my last entry.

I had my thyroid ultrasound which turned into another appointment for a biopsy to check the newest growth.  All came back benign so that was good news.  Bad news is I have a new growth - I think that makes 5 or 6 now.

I also had my tooth looked at and fixed.  Turned out I had significant decay which broke the tooth and needed a root canal.....had that done and I actually go back tomorrow to get the permanent crown placed.  Other than costing me a small fortune, that tooth will finally be fixed.  I'm in need of 3 other crown replacements which need to get done soon - not sure how fast it will take my money tree to sprout, been waiting a while for that!  HA HA

I'm currently waiting on a call from a surgeon to discuss removing my thyroid - I'll have a consult with him and see what he says about it.  In my opinion, if I'm going to continue to grow nodules on it and go through these biopsies, just take the sucker out!  The biopsies are pretty painful and I can do without another of those!  You know it's bad when the Dr who does the biopsy genuinely feels sorry for you that you have had to have so many done.....the nurses and Dr kept saying how sorry they were that I had to have another.

On a happy note, we went on a Western Caribbean cruise which was FABULOUS!!  A much needed week away from technology and life at home....we went to Jamaica, Grand Cayman and Cozumel - it was just perfect and we all had an amazing time.

My main inspiration to write tonight (aside from the above updates) comes from my lack of "restful sleep" over the past several, oh I don't know........decades I would say!  It sucks!

My typical time to go to bed is usually around 8pm and I get up at 5:30 am - plenty of "sleep" but I wake up exhausted - tired all day, every single day.  I'm over it!

I've been searching out "diets" to help with the exhaustion, only to realize that I already eat the "right" foods and combinations that are suppose to help give someone "energy".  So why am I not feeling alive?  I just had my birthday, and really, I'm not that old but good lord do I feel much older!

I swear I go through my days sluggishly, yawning and in general malaise.  People always tell me how tired I look - the thought that goes through my head is "gee thanks asshat you look great today too!"  Why do people feel the need to tell you that you look tired - trust me I already know and don't need anyone pointing it out for me! 

I have my "good" days but the "bad" definitely are outweighing the good.  Other than being absolutely exhausted I feel generally fine.  My body doesn't ache like it use to constantly.  Of course I have my days for that too but overall I do believe my main issue right now is the lack of energy which leads to a lack of motivation to do anything - even going to the store seems like such a huge monumental feat these days.

I am interested in hearing from anyone out there who has dealt with this kind of fatigue for a lengthy amount of time and what you do to combat it.  I'm really at my witts end and am looking to anyone out there who might have some answers or a direction to lead me in.

In the past I took Adderall for the fatigue - sure it gave me energy it's an amphetimine!  I am almost to the point of asking my Dr to put me back on it but really don't want to go that route if I don't have to.  Not only is it expensive to the tune of close to $200 a month it's just not a good thing to be on day after day.  So please HELP!  I'm begging!

Until next time....TO YOUR HEALTH!

January round up.....

To summarize this first month of 2015 I would have to say it's been so, so....

I've been feeling ok but not optimal.  I'm having pain in my hips again, which was the original thing that started me on the road to get a diagnosis of FMS.  I've also been fighting getting sick, which right now has me home under the weather.

Both my kids have also been fighting health this month.  Days out of school due to not feeling well add up for sure and effect them where school is concerned.  It's so hard to catch up after being out a day or two.

Hopefully February and beyond will bring better health for the family.

We do have a big trip planned in March that we are all looking forward to.  We are going on a cruise and can't wait!  This will be the first for my kids (15 and 13) and the first for my husband and I since our honeymoon 20 yrs ago.  So as you can see, it's a trip that we are all looking forward to - very much!  We will be cruising to Jamaica, Grand Caymen and Cozumel over 7 days.  It's going to be great!  I just wish I was 30lbs lighter for it!

Speaking of my weight, oh what a terrible time I've had trying to lose it!  I honestly believe it's because my thyroid isn't functioning correctly. I do have an appt with my endo this month to check it.  Not sure if I've ever mentioned this but I have several large "goiters" consuming my thyroid.  Every time I've had it checked the tests come back "normal" which I don't trust one bit.  I am going to try to get my Dr to put me on a hypothyroid medication this time to see if it helps any of my "symptoms" that I think are totally related to my thyroid.  The symptoms for Hypothyroidism are listed below and the ones I have are highlighted in Yellow:

• Fatigue
• Increased sensitivity to cold
• Constipation
• Dry skin
• Unexplained weight gain
• Puffy face
• Hoarseness
• Muscle weakness
• Elevated blood cholesterol level
• Muscle aches, tenderness and stiffness
• Pain, stiffness or swelling in your joints
• Heavier than normal or irregular menstrual periods
• Thinning hair
• Slowed heart rate
• Depression
• Impaired memory

You would think when a patient has 11 out of 16 symptoms the Dr would look at that in addition to the blood work.  We'll see!  I will definitely update once I see her in Feb.

Of course, a lot of these symptoms also go hand in hand with FMS and CFS - at this point, who knows what's what?!?

What I do know is that I would love to have energy, feel good and lose the weight I've put on. I feel like I do all the "right" things to lose weight but nothing happens.  The only thing I don't do is exercise due to my fatigue and lack of energy to get out and do it!  I keep telling myself "tomorrow" but tomorrow comes and goes without the exercise.  It's a vicious cycle I live in.

So this month has been full of ups and downs in my health and the health of my family.  I'm hoping February brings us all many more good than bad days.

Volleyball has started up and we have games almost every weekend.  We love watching my daughter play so I look forward to those long days in the gym.

That's all for now, until next time......to your health!

Seems like nothing has changed but when you look back, everything has changed updates for June, July, August, Sept, Oct, Nov.....

Greetings friends!  Has it REALLY been since MAY that I've updated my blog??  UGH I'm terrible I know!  So here comes a big update on what's been going on........

June, July and August proved to be busy with the kids and their variety of events.  School was out for the summer and that meant daily volleyball practice, camps and games.  That in itself keeps me on my toes.  We spent nearly everyday at the school for volleyball and a couple times went on trips related to the school volleyball program.  My daughter has such amazing dedication to the sport.

In July I tried to start exercising again- I was doing great for the first week, walking 3 miles a day on the treadmill at the gym.  I set out to try and be more active, try to drop a few pounds, if nothing else, just walking a bit.  After a week of doing this I was in so much pain and I couldn't walk!  I ended up at my chiropractor, IN TEARS because of the pain in my hips.  My right hip was the worst, with burning pain and literally every time I took a step it felt like it was locked up - it was terrible!  I had some acupuncture, some cold laser therapy and an incredibly painful adjustment on the first visit.  It felt so much better after that, I could actually walk out on my own with much less pain.  After two days of this treatment I was so much better but you better bet I wasn't getting back on that treadmill!! FORGET THAT SHIT!  I continued with this course of treatment for 3 days and the pain was finally gone.  The Dr said it was my bursis in my hip flaring up from lack of use to sudden over use - whatever, I wasn't doing it again!

August 12th school started up again which also meant I went back to work with the kids going back to school.  I love having the same schedule as the kids during the year and the summer off to be with them.  Even though the pay working at a school is crappy, it's better than nothing and gives me a schedule to follow, otherwise I would literally not do much of anything day in and day out - that I know!  It's hard sometimes to get up and go to work, really hard, but I do it because I know it's what I need, not only for the income I do get but for the schedule to follow.

September was a non-eventful month just getting back into the swing of a normal schedule everyday. I was extra tired trying to get back to waking up early and working all day but that's nothing new really, I don't think I ever really get use to it.  Still not exercising - can't take the chance of having a major flare like I did in August - oh god that was awful!  We are looking forward to a trip in October for fall break.

October we took a trip over fall break to California.  We've been really looking forward to this.  We planned to see family.  We went and saw my husbands mom for a few days and then went to visit my dad as well as my sister and her family in Palm Springs.  It was so great to see everyone and the kids.  We all live in different areas so we don't get to see each other but maybe once a year.  That's the drawback of living so far away from family.  I am in Colorado with my family, my sister is in California with her family, my husbands family is in California (1 brother in Colorado but 8 hrs away) and my dad is in Oklahoma.  So as you can see we are all spread out.

We were able to get some family pictures done while we were all together and that was wonderful.

Pretty good looking group if I do say so myself!  I'm in the yellow shirt next to my handsome hubby in the blue - my son is in the light yellow shirt and my beautiful daughter is holding her baby cousin.

November to current
Thanksgiving was great, I cooked a nice meal with the help of my daughter.  It was just us 4 but we had a feast and enough to feed us for another week to come!!  I need to learn to cook a little less on holidays!  Now it's that time of year again, the holidays are upon us.  For some of us this is a time of great fun, visiting with friends and family and going to party after party......... and for others it's a reminder that we aren't what we use to be.

I use to go shopping, now I shop online for 99% of the gifts I give....I can't physically go to the store and be on my feet for hours on end walking around browsing and picking out that perfect item....I use to attend many parties during the months of November and December...now I simply have to RSVP a NO because I really don't have the energy to smile and be "merry" for several hours at a time...Trust me when I say it's not because I don't want to or that I don't enjoy the company, it's not even close to that.....it's because my body just won't handle it and I'll end up paying for it for days to follow with pain and exhaustion.  It's just who I am now and I have to accept this as my reality.  As I like to say "It is what it is"...........it's been and has, more than ever, become my life motto.

I know I've been terrible at keeping my entries current and for that I am truly sorry - I really need to figure out how to just get it done......honestly after I am done working each day I am just so exhausted to do much of anything. I'm sure the words "I'm tired" are over used in my home by me and my family is sick of hearing it, but it's true.  I'm always tired, exhausted actually.  Chronic Fatigue Syndrome (CFS) has ruined me.  I've dealt with the CFS longer than I have the Fibromyalgia (FMS) but the two combined is a doozy as you may know or can just imagine.

I have yet to find anything, natural or otherwise, that gives me any kind of good, long lasting energy or the feeling that I can take on my days without the lingering feeling of pure exhaustion.  I did take Adderall XR for many years but it took a toll on me and my goal is to be off all RX medications and only treat my conditions as naturally as possible.  It's really turning out to be difficult.  I've tried everything I'm aware of that's out there.  Maybe I'm missing something or maybe my body is just not "normal" and doesn't respond to traditional things.  Vitamin B12 does nothing for me - I've tried regular injections with no luck.  My chiropractor couldn't believe that I really had no luck with the weekly injections over a course of 5 weeks.  Nope, nada.......abnormal response for most people

If anyone out there knows of something that could be helpful, I'm always willing to try if I haven't already.  I really feel desperate at times.  Along with the lack of energy comes a little weight gain because of the lack of motion.  I could, if life with 2 teens allowed, sit in my recliner day in and day out, only getting up to eat, visit the bathroom and maybe get a drink.  It's really sad for a 44 y/o to feel and act like a 94 y/o day in and out.  I do my best with the cards I've been dealt.

As for my pain related to FMS....it's always been primarily in my hips,  That's where it started and that's where it pops up the most.  As I shared from August, I had a terrible flare from exercising and it was in my hips.  My lower back and shoulders also have flares.  The most common thing I'm dealing with now is numbness and tingling in my right arm and hand.  At times the nerve that runs down the arm feels like it's on fire and that is just miserable.  Aside from those things I'm doing ok, the exhaustion from CFS seems to be worse now than the FMS but both are ever present, every day.

I still see my chiropractor every week when possible, in reality though it's more like every 2 weeks when I'm feeling well enough.  Without those treatments I don't think I would be in very good shape.  Adjustments really help so much.  More than anything else I've tried, keeping my body "straight" with regular adjustments seems to be the best treatment for ME.  I highly recommend you give it a try if you aren't having any relief of your FMS pain.  Find a good Chiropractor who is familiar with FMS and can effectively treat you.  It's worth it!

I'm looking forward to a 2 week break coming up.  December 19th - January 3rd is our "winter break" - we will of course be celebrating Christmas and New Years during that time.  I'm most likely going to cook a nice meal for Christmas - probably just a ham, mac and cheese and salad.  Nothing too terribly extravagant.  My family will go to The Outback Steak House on Christmas Eve - it's a tradition we started a few years ago instead of cooking a big meal at home.  I like having someone else do all the work and clean up!  Since it's just the 4 of us, it really makes sense.

I hope this update finds you well and coping well.  I know some might be having a hard time and I sincerely hope you find relief for yourself.  If there is any advice I could give it would be to not give up on finding what helps you!  Since FMS effects everyone so differently, you need to find what helps you - I know that what I suggest might not be your thing, I just know it's helped me get as much of my life back as possible and I will continue to search for more until I feel that I've exhausted every avenue.

I am going to leave you with a recent article I found - To your health and until next time!

FMS linked with Coronary Heart Disease

I find the above article interesting.  I have heart palpitations pretty regularly but my Dr has never been too concerned about it.  I also have family history of heart disease so I suspect as I get older I will start having regular heart check-ups to make sure my heart is not misbehaving.

So much going on

Hello friends!

Just a quick update - things have been crazy around here!  Always, when I think things are going to slow down, they don't, something always comes up.

At the end of April I went to MN with my daughter for the Northern Lights Volleyball tournament.  That was a fun weekend but of course the travel created more fatigue.  Traveling is hard, even harder when you have CFS and Fibro.  It seems everything is harder.  It was a long weekend of sitting in the convention center cheering on the team.  My daughter happen to get sick that weekend too so it was a bit rough.

This past week I ended up in California with my daughter as my sisters baby is very sick and in the CV-ICU at Children's hospital awaiting heart surgery.  She was born at the end of March with ASD (atrial septal defect) and VSD (ventricular septal defect) as well as a paralyzed left vocal cord.  In addition to this, she has severe reflux which, with her vocal cord issue causes her to aspirate into her lungs. She needs heart surgery badly but they are trying to sort out the reflux so she doesn't aspirate during surgery.  While ASD and VSD are pretty common defects, hers are larger than what they normally see and with her vocal cords, reflux and aspiration it makes it all very serious.

Visiting was nice but also hard to see that little baby in such a situation.  She is a sweet little thing and I pray the Dr's can fix her all up.  I am not aware of any reason why they won't be able to but the entire situation is just so sad and causing a lot of stress within the family as you can imagine.  For me, that stress comes out in the form of a flare - my lower back is really tight and my fatigue is slowly peaking again.  Worry is never good no matter who you are, it just so happens that those of us who have other health issues tend to suffer more when we are not mentally healthy as well.

I've been continuing on the B12 injections and honestly can't tell if they are helping or not.  I guess, with how busy I've been I can say they are since I'm not having a major fatigue flare, but on the flip side, I'm still extremely tired and trying to catch some rest when I can - going to bed early at every opportunity. So I just don't know for sure really how well, if at all, these injections are helping.  In the past, I definitely didn't respond to them, so I've been getting them to try to see if I respond now - and I have a feeling I'm going to find that I don't to any significant degree. At least not enough to continue on them anyway. I guess only time will tell.

The school year is winding down and that is keeping me very busy at work.  There are 17 more school days to go until summer break.  I can't wait to be done with work for a couple months.

It's May 12th and we had a pretty good dumping of snow over the past 2 days. It's hard to believe it's mid spring when you have a foot of snow on the ground!  Usually we are planting our gardens by now - not this year!  The rest of this week is suppose to be nice and hopefully, just hopefully, this will be the last snow of the season for us.  I'm really ready for warmer weather!

So that's it for now, until next time - to your health!

Gerri

I knew this would happen, was just a matter of time...

Since my last entry on April 7th things have been crazy…..just crazy………….and I'm certainly paying for it with a major flare.......god I hate fibro, I hate chronic fatigue - I HATE IT!

So our insurance called to let us know they totaled the van as the crash had done some damage to the frame.  With that they sent us a settlement letter requesting the title be signed over to them and offering us some money to replace the car.  They offered us a little more than we expected so we were happy with their offer and just wanted to get it done.  Of course the amount is not enough to get the same vehicle or even anything close.  It’s a shame, I went from no car payment and a car that still had plenty of life in it to looking to replace it with something that was similar – good luck right?  Not exactly what I was looking for but it is what it is.

Let the stress begin – all I can hope is that I don’t end up going into a major flare over this entire process…….fingers crossed as we embark on the car search…financial worries and all that comes with it…fun times! 

So I stared off by doing a lot of research online and looked at a lot of different cars.   We knew we wanted something 4WD or AWD to start.  Nissan, Subaru, Dodge, Jeep, Ford……the list I’m sure goes on, honestly I have really forgotten all the different brands and styles, at this point it's all just a blur.

I was initially set on a Jeep Patriot – however, after looking at the reviews and sitting in it decided it was not the right car for us.  Too boxy for starters…..although I do love the way it looks on the outside, it’s just not the right fit on the inside.  In fact, every time I see one I take a double look, I just like the way they look.

We sat in many cars over the past 2 weeks – the Murano and Rogue were nice – I really liked them both – it’s hard to get use to going from a mini van to a much smaller car but it’s time ……nothing really struck our fancy much……so the search continued…….

At one dealer we were introduced to the Dodge Journey – this car was one that did strike us as something we liked.  It is very similar to what we had in both color and options but yet different enough – it was a 2013 and had 28k miles.  We drove it – enjoyed it’s power and comfort.  We left that dealer with the Dodge Journey as our top pick from the day.  But we still wanted to check out some other cars so we weren’t quite ready just yet to make a commitment on it.

As the week went on we continued to search – looking for used vehicles between 2010 and 2014 that weren’t priced too high or with too much mileage – that really narrowed down the field for us.  I looked at a Ford Escape – BLEH – the 2010 model I sat in felt so cheap – the 2013 had bad reviews.  It felt like it was very cheap plastic inside – while it was the size I was looking for and the price – I couldn’t get over how cheap it felt and I knew I wouldn't be happy with it.  Probably because I’m use to the nice interior that generally comes with Dodge vehicles.

So needless to say, the Ford Escape was now off our list.  At this point our options were getting much more narrow and I was getting really tired of looking – literally tired.  All the walking around, talking with people and internet research was catching up to me – we weren’t getting home until late every night and our entire “normal” schedule has been off really since the crash on April 3rd.  I’m now feeling the effects of it all in full force – my fatigue is off the charts this week.

Wednesday this past week we decided to go check the Dodge Journey again.  After several days of going around looking, dealing with pushy sales people and not finding anything we liked, I wanted to see the Dodge one more time before I made a decision.  We went, we looked, we still loved – so the choice was obvious – let’s talk numbers!  We also really liked the sales person we dealt with.

We ended up staying at the dealership for HOURS – we had to come to grips with several things before we could feel comfortable with our decision.  For a variety of reasons, our credit scores aren't that great.  That right there put us in a bad situation for our APR on a loan…….the dealer worked with what they had and ended up getting us as good a deal as they could considering.  I was leaning towards continuing on looking as I really wanted a lower payment, however, with our credit, we were unlikely to find a lower payment even if we found a less expensive /older car.  My husband reminded me too that if we left we would put to chance that the car we want would be gone, and that we might not find another like it.  So after thinking and thinking and thinking we said yes to the car!  I’m now driving a nice black 2013 Dodge Journey, AWD with 28k miles.  We were able to negotiate a lot of things so we ended up getting some good deals attached to the car.  Our 1^st 4 oil changes are free with the dealer, the entire car is covered on any problems it could have pretty much for the life of the car.  That makes us feel good about the purchase and comfortable that we won’t have to shell out even more money should something bad go wrong with anything on the car – lots of electronics so that is a great peace of mind for us.  At most we would have to pay a $100 deductible to get anything fixed - sounds great to me!

Here it is Friday as I’m writing this update and I can barely keep my eyes open.  I’m so exhausted from everything this week.  My chronic fatigue tends to flare out of control when my “normal” schedule gets upheaved like it has this past couple weeks.  Between driving my husbands older truck, which is difficult for me to even get into most of the time, the stress of trying to find the right car, finding the right car and the stress involved with that purchase – it all adds up and ends up leaving me dealing with excess pain and fatigue that I haven’t had in a while.  My normal aches and pains are in overdrive and like I said before, my fatigue is just off the charts.  Of course life goes on so I have to push myself through and get things done - but believe me, as soon as I can, I'm down for the count!  

This weekend my plans are to rest if I can.   That is of course after I grocery shop, plan Easter dinner and get things ready for the kids – but after all that, rest!......is there even time to rest?

I saw my Chiropractor on Friday and he gave me a shot of B12 - historically B12 does nothing for me at all - I'm one of those who just doesn't metabolize it - but we thought to give it a try and see if anything changes - maybe my body has changed since the last I tried it. 

Coming into this next week I work M-W and then my daughter and I are off to MN for the Northern Lights Volleyball Tournament.  She will play with the 17’s team from her club as they invited her to join them for this tournament.  It’s a great opportunity for her and we are very excited.  Of course this trip will most likely not help my fatigue as traveling tends to take it out of me so I don’t suspect won’t feel much better until well into May when things finally start to settle down in my world and I can get the rest break I so much need in order to get back on track.

Through all this I’ve been continuing to see my chiropractor and getting adjustments.  That’s been helping a lot – I have also had some acupuncture, which helped my ribs finally stop hurting.  They were hurting so bad, I am sure from the accident.  After the acupuncture they finally stopped hurting.  

Today (Saturday) as I'm finishing up this post I wanted to add that I am not as tired as I was yesterday - so maybe that B12 did help a little.  I went to bed early last night too.  On the other hand, my entire body hurts - I think it's just par for the course with having Fibro and Chronic Fatigue - I just hope this flare leaves sooner rather than later.

Whew, that was a lot to share this week!  If you made it this far, I applaud you and thank you for your continued interest in my story.  

Until next time - to your health!

Gerri

Interesting study on FMS and HSV (Herpes Simplex Virus)

My entire purpose of starting this blog is to keep my own research someplace that I can refer back to and reflect on.  Another reason was to hopefully touch the lives of others who may find themselves in a similar situation as I did about 4 yrs ago - sick with no answers!  It's not a fun place to be and actually a very desperate place to find yourself.

Over the course of time as I started to feel better and become more active in my own life I slowly stopped posting things to my blog - this was not intentional, just an oversight as life gets busy.

My goal right now is to keep up on this blog, continuing to add beneficial information that I have found online myself or that was sent to me.  I hope to be a source of information to those out there who seek it and to keep those who wish to be kept up to date on how I'm doing with my own struggles.

Today I read an article that I found quite interesting.  As anyone who suffers from FMS, CFS, and other chronic issues we don't really have any answers but all these studies being done touch on the POSSIBLE - they still have a long way to go to be proven or to even have a remedy that will work.  It's a sad place to be, looking in on these things with the hope that someday in our lifetime they will find something to help us - until then, we carry on, trying new things until we find something that works well enough.

You can read the article HERE

Until next time - to your health!

Gerri

I just stumbled across this interesting information - a must read for every CFS/ME/FMS sufferer......

Study on THIAMINE (B-1)

I just read this information and am inclined to run out and get some B-1 in high doses and give it a try - can't hurt right?

To your health!

Gerri

Spring Break time, family time, VOLLEYBALL and me.......

So here I thought it's been a few weeks since I've posted and when I looked I realize it's been a month already - sheesh.  Things are "Status quo" with nothing really "new" to report.  Well, one thing is new, my sister had her 2nd baby!  So we have a new family member, Ms Audrey Rose Gordon.  She is precious of course!

As most of you know I'm always on the look out for new and great things that will help with CFS/ME, Lupus and FMS symptoms.  Well I have recently found a product and I want to tell you about it because I'm excited about it's potential. It's called "Aloha" - basically it's a dried green juice powder!  SHUT UP!  I literally was just thinking about how I wish there was a product that would give the benefits of juicing in a much easier form such as a powder or pre-made but good drink that was affordable....I know, I know, in my dreams!  Or at least I thought! Then I see an ad on Facebook pop up one day that caught my eye - it was EXACTLY what I had been thinking about - weird I know!

They appear to be a relatively new company and the product is exactly what I've been looking for.  I was able to get a sample of it and so far have found it to be just as good as it seems.  I mix the powder into my daily protein smoothie because on it's own it's quite harsh tasting!  I made the mistake of mixing it with just water when I first got it - ACK - I drank it but man, I won't make that mistake again!  If you have ever had spirulina straight, that is exactly what it reminds me of - but I find mixing it with my smoothie drowns out the strong taste and it's palatable.  I'm always looking for ways to easily incorporate lots of vegetables and goodness into my daily diet and this seems like a great way to do just that without the time/money/mess it takes to juice all the same things (and then some). Don't get me wrong, I love juicing and all the amazing health benefits but it is just too time consuming for me to do it on a regular basis anymore.  For the same cost, if not less, I can get the same benefits out of a package of dried juice - easy, fast and most of all convenient.  Check it out here Aloha - The Daily Good.  As anyone who is dealing with the affliction of a chronic illness knows, the more good stuff we can put into our bodies, the better off we are all around.  I really encourage you to check it out if you are like me and want to put the good things in but just don't have the time and energy to juice 3x or more a day.  With this, you take it once a day and you are good to go. There are 14 organic ingredients that promise to help detoxify, energize, hydrate and best of all BOOST IMMUNE SYSTEM function!  The process they use to dry the ingredients doesn't take away the nutrients or fiber which a lot of the time juicing does - so there is another bonus!  I've been using it just for a few days now so I can't honestly report anything over the top with it but I do plan on continuing to use it for the internal benefits I believe it will deliver.  A strong immune system is a huge plus for me.  I can also say I have noticed a temporary increase in my energy when I take it so that is always of course a huge plus!

In other news, it's spring break for myself and my kids - very much needed I might add!  I was thoroughly exhausted by the time it came along.  Last Friday was the first day and honestly I haven't done a whole lot since.  We did have an all day volleyball tournament on Sunday, but aside from that I've pretty much been a lazy lounger......of course I'm still keeping my normal schedule of going to be around 8 or 9pm but I'm able to sleep in past 5:30 am which has been nice.  I'm finding myself getting up around 8am, still tired but unable to sleep any longer.  I also have been noticing I wake up a lot at night, which isn't uncommon and surely part of why I'm always so tired, I'm not getting restful sleep.

So I wonder how many of you feel like I do - lazy.  I often feel like my illness has made me very "lazy" for lack of a better term - I feel lazy because I just don't want to do ANYTHING most of the time.  It makes me feel bad because I know I "should" be outside enjoying the nice weather, exercising, taking the kids out to do things etc.......so I start to get on myself and negative thinking hits.  I can sit here all day in my PJ's - easy.  So I wonder, is it just me being LAZY or is it truly because it's not often that I get to do it and when the opportunity shows itself I'm all over it?  Am I lazy?  Some would say YES.  I on the other hand am not sure at this point.  While I know I'm chronically sick, it's hard to convince even myself at times.

Volleyball is coming to an end soon - this has kept us very busy and on the go most of the time.  With 3-4 practices a week and an all day "power" each Sunday we find very little time to do much else.  Early mornings and late nights tend to be our M.O. during the club season.  As of May there will be a little break in the action before the summer camps start up with the school.  My daughter loves the sport and we are so blessed to be able to give her the opportunity to play for a club and in school as well as the countless other things she gets invited to do.  My husband and I love watching her too.  Our son on the other hand, not so much.  He isn't a big fan of noises so volleyball is really something that stresses him out.  With his sensory issues it's not the most accommodating sport for him.

Now I have a question for those of you with CFS/ME and/or FMS.  What strategies have you found work for you to keep you in a good place with your illness and struggles that come with it?  I feel like I do all the "right" things most of the time but still find myself very tired - some days more than others.  Some days it's very hard to get myself through and I can't wait to get home and collapse in my rocking chair/recliner.  I'm just curious what methods or things you do that keep you on top of your illness and what things you find make you crash and burn??  Thanks in advance for sharing as I know it can be a very personal thing.

Personally, I find that every day is so different from the last, especially dependent on what I did or didn't do for myself.  Things we put into our bodies will effect how we feel in the near and sometimes not so near future.  I find it hard to stay away from sugary things though, which for me is a downfall as I'm sure that lends to a lot of my symptoms of being extra tired. I also have a very hard time managing my weight NO MATTER WHAT I DO....Since being on the Body By Vi challenge I have found it easier to maintain my weight and I enjoy the fact that I'm getting great nutrients from the protein shakes but I wish I could LOSE weight as effortlessly as it seems others do.

At any rate, I hope this finds you well and enjoying spring!  Please send me comments if you have anything to share or say about anything I've put in my blog.  Let me know you are out there!  I am beginning to feel like I'm writing to a black hole!  I'm off to get some laundry done (the never ending pile seems to get bigger by the day) and then spend the evening in the volleyball gym - it is our life for now!

To your health!

Gerri

Tired is an understatement

Those of you who suffer from Chronic Fatigue know what I mean.  To just say "I'm tired" isn't really giving a good indication of how you really feel.   Exhausted is a good word but even that doesn't do it justice.

Quite frankly, I'm tired of being tired!  This week my CFS has been in overdrive - I was doing good for quite a while but last week was on the go for several days in a row - late to bed, early to rise and now I'm paying for it with extreme sleepiness even after 9 hrs of sleep for several days in a row this week.

My body aches are present and I just feel out of sorts.  I hate this!  I hate this disorder, I hate feeling useless and being useless.  Hate it all!

This is an interesting article HERE - I might need to find a functional medicine Doctor to get me on back on a good path with a cleanse and immune system treatments.

Has anyone ever done anything like what is mentioned in this article?  If so I would love to hear about it!

Wow, time sure does fly!

Hello!

I'm still here! I can't believe it's been a few months since I last posted.  With the holidays things got crazy and they just haven't slowed down yet.  I hope everyone had an incredible Christmas and New Year Celebration!

I'm doing just fine these days.  Of course with Fibro, everyday is different and we have "those days" but all in all I am doing great.  I really can't complain about the minor set backs because they seem to be few and far between anymore.  My chronic fatigue seems to be bothering me more than anything else but I think I've grown accustomed to it and just deal with it.  I'm always tired, I always have been as long as I can remember so it's just something I have learned to deal with.  On the rare occasion that I don't feel like I haven't slept I feel like what I imagine everyone feels like after a good nights rest.  On average I get somewhere between 8-9 hrs of sleep but feel like I have only had 2-3.

I'm still seeing my chiropractor pretty regularly, usually once a week sometimes once every 2 weeks.  It's the one thing that keeps me going and I really believe it's the regular adjustments that are keeping my Fibro under control.  Now if we could just figure out this Chronic Fatigue I might just feel normal again!  Heck, I don't even know what "normal" is.

Speaking of Chronic Fatigue, here is a great article about it - What is Chronic Fatigue Syndrome?  For anyone reading this, it should shed some light on the disorder for you.  For those of you who might have it - I think you'll agree with what the article says.

When it comes to symptoms, I tend to have them all most of the time.  Below are a set of common symptoms, I've highlighted the ones I have almost constantly:
Symptoms include sore throat, flu like symptoms, problems with balance, sleep problems, dizziness, sweating, muscle and joint pain, un-refreshing sleep, cognitive difficulties, physical and mental exhaustion, tender lymph nodes and headaches.  With time the condition gets severe and you could become depressed or have mood swings.  I often get dizziness and headaches as well but the ones I highlighted are pretty much a constant in my daily life.

That's about all I have for today - one of my goals this year is to post a little more than I have been and keep you all constantly informed about Fibro and CFS.  It took me a really long time to get answers and if you or someone who knows someone who could benefit from it then I've done what I originally set out to do.

I hope this finds you well, happy and enjoying life as much as possible.

Gerri

Another great article about Gluten intolerance

Those with auto-immune issues should really check this out and take it seriously.  I think I'm pretty close to being gluten free - am going to really make sure not to consume any for the next couple weeks to see if my symptoms continue to improve.  Overall I feel pretty good as long as I continue to get adjustments weekly and eat a raw healthy diet.

Check it out, and I would love to hear from anyone who IS gluten free and finds that it makes a difference in their symptoms.

10 signs you are Gluten intolerant from Healthy Holistic Living

As always, to your health!!  Take care of the body you live in - if you don't, who will?

Gerri

It's been a while - I'm still here though!

I know it's been a while since I last posted so it's time for an update! First, I hope you are all doing fantastic and enjoying everyday that you are given.

I am happy to report that I'm continuing to feel more and more like the old me again and it feels great! Of course I have my moments and my days where I feel like crud but more and more I have better days which is really great!

I've got my "spunk" back and I can't tell you how great it really feels. Anyone who has gone from very ill, bedridden, feeling like there is no hope etc., to living life again can understand what it feels like to be back! Anyone who is still on the journey to find themselves again, keep it up, it's worth it in the end! And YOU WILL find yourself again if you do the things you need to do in order for that to happen. This condition is not going to fix itself without a fight from you! If you can go as natural as possible, that is the best way to go, it might be harder but it's better at the end of the day, no doubt!

So let me backtrack to January real quick - I finished my treatments with the Fibromyalgia Center just after the first of the year. My intentions and as the program is, I was to go on a maintenance schedule with them having an adjustment 1x a month, however they did some re-arranging of the practice and I wasn't able to get into see them as easily as I could before when I was in the program. I really honestly feel that they dropped the ball on my "after care" and I have yet to hear from them, not even a "how are you doing, do you need to come see us" call or anything. I tried to get an appointment with the Dr and the acupuncturist 4x but they put it on me to call each one to schedule since they weren't all in the same office anymore - same building just different offices....I was completely put off by that considering prior to them reorganizing I could call and schedule with both very easily. I'm a bit disappointed in that fact so about two weeks ago I set out to find myself a closer chiropractor who could help me with my fibromyalgia and keeping me on the right path to better health.

After having gone through the 1x a week program and combining Chiropractic care, acupuncture, massage and specific nutrients into my life it is obvious that this mixture REALLY WORKS to help people with this condition. It isn't an overnight fix by any means and will be an ongoing thing in order to stay on top of the condition and symptoms. And of course, most insurance companies don't cover those things which is so unfortunate because I think more people could get help if they could use their insurance for that help. It's sad to know that there are so many people out there who suffer and take heavy medications that either cover up the symptoms or in some cases make them worse off when natural and holistic care is truly the course to take in the long run. I 100% believe this for anyone who deals with fibromyalgia and chronic fatigue as well as many other chronic health conditions. Heck, if more people would use chiropractic care, they would be healthier all around.

After visiting with several local Dr's I did go see one that my mom has seen. It turns out that he also has a massage therapist in the office and the Dr himself does acupuncture - SCORE! As I was sitting in his office waiting I also noticed he offers the Nutrient blood test that I had taken back in July with the other place - DOUBLE SCORE! I'm a beyond THRILLED that I went to see him because essentially I will be getting the exact same care I was getting at the other place and will be able to save a lot of time doing it! The new place I'm going is literally 10 minutes from my house vs an hour drive.......so you can see why I'm so happy!

Yesterday I had my first adjustment with my new Dr - Dr Hatch and it was obvious I needed it bad! My hips up to my neck were way out and I'm off about 3/4 inch on the right side which is where I get my major hip pain. I'm confident that his care will be exactly what I need to stay on the right track. I'm scheduled to have an hour and a half massage on Monday with the massage therapist which makes me a happy camper - primarily because he couldn't adjust my neck it was so stiff and because I'm having such pain in my right shoulder and numbness in my hands again. So the massage will work on that and I'll also be getting the acupuncture work on that shoulder to work on eliminating those issues again.

Since I haven't had any of it since January I knew and could feel in my body that I was starting to backslide so I'm really thankful that it all worked out so good and that I took the initiative to go see him...in my town there are literally about 20 or so chiropractors in the general area - but I don't think any of the others combine all these services in one place.

For now I'll be going to see him 1x a week just to get my body/mind/spirit back into a good place, then we'll go down to 1x every other week then eventually 1x a month.

Since I've been feeling so much better I've also been able to get my business up and going again. It's taken a few months to get the momentum going but it's going now and I'm thrilled I actually have the energy and desire to get out and do the parties.

My daughter has been playing volleyball since late last year and that has been keeping us busy as well. It's just really nice to be able to enjoy my kids, husband and friends again. It had been a long time since I could really say that I was excited about anything in my life because I felt so crappy all the time, morning, day, night, it just didn't matter - and when I did have business to tend to, more than not I had to give it away to someone else because I just didn't have it in me. All of that is behind me now though!

Someone recently asked me what would happen or what I would do if I got sick again - my response to them was "that isn't an option and it's not going to happen" - I think my response surprised them but I was/am very serious when I say that. I've learned how to listen to my body and know that as long as I do that and do the things I need to take care of myself that I won't be laid out like I was when this all first started back at the mid of 2010. And, if I have any power to avoid being THAT SICK again, I will avoid it with all I've got!

For anyone who is reading this who is in the thick of being ill with this or any other chronic condition, please feel free to contact me if you like. My blog has always been dedicated to helping others find a way to feel better - please browse my past postings and the links I've provided for you - for an entire year, all I did was research and find information - and I believe that is why I'm where I am today - because I was determined to get my life back....it took a little time but again, I am living proof that if you want it bad enough, you'll get there!

To your health and happiness friends! And please remember, if you don't take your health into your own hands and do something about it, nobody else will!

An Open Letter

Having Chronic Fatigue Syndrome (AKA CFS) and Fibromyalgia (AKA Fibro or FMS) means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS or FMS and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand..........................................................

These are the things that I would like you to understand about me before you judge me or decide that I'm just lazy..........

Please understand that being sick doesn’t mean I’m not still a human being. Sometimes I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s very common) that one day I am able to walk to the park and back, do Zumba and play with the kids while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. CFS and/or FMS may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – if I could do it, believe me I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. CFS and/or FMS does not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS and/or Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS and Fibro, if something worked for everyone we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.

Please understand that getting better from an illness like this can be very slow. People with CFS and/or FMS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you – people who are not sick – for many things.

But most importantly............................................................
.....................................................I need you to understand me.

Can it really be happening finally?

I am almost afraid to say it because I'm afraid I'll have to turn around and take it back....but here it goes.......I'm feeling really good! THERE, I SAID IT, I DID IT....and I'M NOT WILLING TO TAKE IT BACK! It's out there, it's real and it's going to continue!

I really think the treatments I've been religiously going through and the various supplements I've been taking are finally starting to work to combat my Fibromyalgia and Chronic Fatigue. I'm feeling less and less of the fatigue that has been such an issue and I'm noticing my pain and other symptoms are beginning to become less and less as each day passes.

I've had several people ask me what my treatments are so I'm going to list them here, again. Now if you are someone who suffers from the all over body pain of Fibromyalgia you might sit there and say "oh this won't work for me, I hurt too bad to allow anyone to touch me" however, don't discount the effects of these treatments - I'm no different than you, I too have widespread body pain that at times it is unbearable to think of someone touching me.....but, if you stick it out you will see how it does help to release the tied up muscles and tissues that are causing you all the pain to begin with.

My treatments are being done at a Dr office in Colorado that specializes in Fibromyalgia care - it is a back and spine center that has a special program specifically for treating Fibromyalgia and Chronic Fatigue. They are of the belief that treatment should go in graduated phases and are not ones to try to cover up the problem, but rather work with the patient and their individual stage of the conditions and offer treatments to help them overcome those symptoms gradually and over time. In addition they also review your nutritional needs and only do what you can handle them doing, nothing more, nothing less.

So for me I go 1x a week for 20 wks. The first 5 weeks was Phase 1 - this consisted of 1hr theraputic massage, trigger point injection and an adjustment.........the trigger point injection helped with any pain I might have had after the massage...and it did eliminate the pain I would normally experience. At times the massage was painful, yes, however, it was a necessary pain to get through.

Phase 2 (which I'm currently in) also lasts 5wks - consisting of soft tissue massage which is more of an interactive massage where I have to do movements along with the massage to stretch the tissue and muscles along with the massage being done.....whereas the theraputic massage was just massage with me laying there......then an adjustment after.

Phase 3 (5wks) - accupuncture and adjustment
Phase 4 (5wks) - physical therapy and adjustment

I'm at the end of phase 2 with 2 more treatments left and am just in the last week really noticing some changes in the level of pain and frequency of pain I am having - also with less fatigue than I've been use to.

Supplements I've been taking for the past 2 months haven't changed (you can read back a few entries in my blog as to what I've been taking) I did literally today just add an Omega 3 fish oil and probiotic.

Now let me say when I first started with this Fibromyalgia center I was extremely cautious with my expectations and honestly didn't think that massage and adjustments would miraculously "cure" me - nor do I think now that it's a "cure" but rather a way to release the cycle my body has been stuck in.......the vicious cycle of pain.

I'm really excited that half way through my 20wk treatment plan I'm noticing some positive changes and am really looking forward to my next phase with the acupuncture. Acupuncture has been one thing that I've read about many times that has been something a lot of people say has helped them feel better where both pain and fatigue are concerned. I can't wait to see how it helps me to continue to feel better and find new levels of energy and get back to the life I've missed out on this past year.

If anyone wants more information please feel free to ask - I've done a ton of research and continue to research this condition as it's something I'll be dealing with forever....but I do believe that there are effective treatments available that when done consistently can help put you into remission and get you back to living a normal life full of activity and pain free. That's my goal.

Now I also fully expect that there will still be times that I don't feel well, that I have a flare up, that I'm extra tired and all that jazz that comes along with this relentless condition - but I also think that having it under control will help me get past those days and back to feeling better. You must listen to your body, rest when you feel you need to rest and not overdo it.......listen to your body and what it needs.

Information overload! Where do I put it....here, that's where!

So much information is available out there on our "information highway" that it's become a bit of an overload on my brain! I can only focus on so much at one time and with all the research I've done over the past year I am finding that I am either reading the same things, just on different sites and/or finding one good bit of information on things then another site to contradict what I just read. I'm glad to be able to find information as well as information that challenges it but it starts to become blurry and confusing after a while.....frustration set in this past week as I've been looking at going "gluten-free" and dabbling with it - it's not as easy as I had thought it would be.

It turns out that really eating "gluten-free" requires the desire to cook, the desire to spend the extra money on the grocery bill and the need to know that it really does make a difference.......as of right now I don't want to cook, I don't have the desire to spend our money on these specialty products that may or may not help me feel better. I was shocked when I saw the prices of "gluten-free" bread......among other things it's not a cheap venture. So, with that, I guess it won't be a huge shock to anyone that I haven't given up gluten in my food although I am more aware of it and what I'm putting into my body.

On another note, it's now been 30 days since starting all the supplements I had talked about in July. So far I'm not really feeling a major impact from them, but I do know it takes a while to build them up in the body, so I'm not going to give up on it. I'm sure they are doing great things for me. I've made a little bit of an adjustment to what supplements I'm taking and currently. In addition to the supplements discussed back in my July posting I am taking the following on a daily basis as well:

*bee pollen (in the loose form) - if you have never heard about the benefits of bee pollen you really need to check it out! I just picked some up at the Vitamin Cottage yesterday and had my first dose today. I'm all about giving it a shot. Bee pollen has been called "natures perfect food" among other things. After reading about it I was eager to add it to my daily supplements. I believe the loose form is best as it can loose some of it's fundamental goodness through processing and manufacturing - make sure you read about it before you go out and buy a bottle of pills or something that could just be a waste of your money....know what you are looking for and getting!

*Adrenal Stress End - This supplement supports your adrenals and helps them function better - I believe part of all the madness is also adrenal stress so this addition is necessary in order to stop the cycle - this one supplement also includes 150mg Vit C, 50mg B6, 100mg Pantothenic Acid (AKA B5), 400mg Adrenal Polypeptide Fractions, 250mg Betaine (helps with digestion), 250mg L-Tyrosine (one of the 20 amino acids that are used by cells to synthesize proteins), 200mg Licorice (among it's many health benefits, licorice has gained a reputation for strengthening the body during times of stress) and 35 mg Adrenal cortex extract (helps to repair adrenal function).

*Metabolic Advantage - I added this one since I firmly believe I have thyroid problems even though my Endo Dr says otherwise - due to the nodules I have and the indicators/symptoms of hypothyroidism I'm certain this is going to be a beneficial supplement for me. This thyroid support supplement that also incorporates 100mg B12, 200mg Iodine, 200mg Magnesium, 6mg Zinc, 300mg cooper, 2.3mg manganese, 248mg L-Tyrosine...both link enclosures have great information for you to explore further.

*Turmeric - I just learned about this spice used as a supplement this week and it's another one that I was eager to get on board with. The benefits of taking this daily are great! Although nothing is scientifically "proven" the responses from people who have taken it are good. When I first went looking for this in the vitamin section I found that the entire row was gone, so people are definitely using it as supplement for health.

*DHEA - 25mg - my PCP had told me to take this a year or two ago for help with the, um, shall we say lowered libido, to which I did purchase it and take it temporarily - I found it in my cabinet so figured I would add it to the list since it does have benefits for people with FMS/CFS according to sources I've read - I can recall where I had seen it listed however, I did see it enough in my reading that I decided it was worth trying again.

So all in all I'm taking 10 pills in the morning, 2 in the afternoon and 2 in the evening - that's the ideal situation - in reality, I take my morning 10, my dose of bee pollen and usually forget the later day doses which are the additional NAC and L-glutamine doses I should take. I am working on remembering to take those though...it's all a process of getting use to taking so many pills throughout the day.

I'm still having a nice big glass of fresh juice every morning as well.

The past 2 weeks I have missed my treatments due to one thing or another - last week was because I was too sick to go and this week because I had to take the kids to the Dr which just so happened to be during my appt time. Due to the fact that my appointments take all day to and from I had to cancel and of course they were booked solid the rest of the week so I couldn't re-schedule. I do however, have my next one this coming up Monday that, as of now is a go.

The one question that is burning in everyone's mind and asked all the time is "Is all of this helping you feel better?" - usually my answer is "I don't know" because honestly, it's too soon to really say either way. I can say that I am not "SICK" in the sense of having a cold, respiratory illness or anything like that, however, each day is still unknown and each day is different - when I start having multiple days of feeling great, you'll know it because I'll be shouting about it anywhere I can! I anticipate that it will take a few more months of supplements and treatments to really get to a point where my body is functioning "normally" whatever that is.

We have to remember that it has taken many years to get to the point of bodily functions failing and falling apart so it's going to take time to fix the problems that are now labeled as "fibromyalgia", "Chronic Fatigue", "adrenal stress" - how much time is not known and is going to be different for each person...but each day we are closer to being better by the things we are learning and doing!

I hope you are doing well on your life journey and finding useful information from my journey. Everyday is a new opportunity to learn more and find the right combination of nutrients, rest and activities to help make all this work to our benefit.