I wish I had written this, but it is a reposting....

A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT ME AND FIBROMYALGIA:

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keeps me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia. Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes... or their bodies.

to purchase this (as well as many other) fibro t-shirts, visit this site

Saturday in the park
recorded by Chicago (appropriate, no?)

I think it was the Fourth of July
Saturday in the park
I think it was the Fourth of July
People dancing, people laughing
A man selling ice cream
Singing Italian songs
Eicay vare, eise narde
Can you dig it (yes, I can)
And I've been waiting such a long time
For Saturday

Another day in the park
I think it was the Fourth of July
Another day in the park
I think it was the Fourth of July
People talking, really smiling
A man playing guitar
Singing for us all
Will you help him change the world
Can you dig it (yes, I can)
And I've been waiting such a long time
For today

Slow motion riders fly the colors of the day
A bronze man still can tell stories his own way
Listen children all is not lost
All is not lost
Oh no, no

Forty days in the park
Every day's the Fourth of July
Forty days in the park
Every day's the Fourth of July
People reaching, people touching
A real celebration
Waiting for us all
If we want it, really want it
Can you dig it (yes, I can)
And I've been waiting such a long time
For the day...

US does not support or help sustain families/children

OK, my posts are getting increasingly political (and awful soapbox-ey). But, so is all the other rhetoric in the country. When in Rome.... (oh, bad metaphor).

The following article motivated this post:

Parents Press for Autism Insurance Coverage

OK, I have been called a socialist before...and maybe I am. But I have my own opinions and ideas about raising children with disabilities (as I have had lots of experience with the sacrifices of that role).

I think we can insist on insurance covering autism all we want. I don't think succeeding in passing such bills is really going to help parents of autistic children that much. It is not just insurance coverage that is the problem. It is the governments utter lack of support for families, especially families with disabled children.

Much like many families with disabled children, we are in a financial shit-hole. I cannot work. That is mainly due to having two young sons with disabilities and only partially due to my own health issues. So, we only have one income. While my husband makes a rather good income in this state, our house payment is about 45% of his income. There are utilities, insurance, and other expenses before we even talk about credit card debt and groceries (one of our children is on a very special diet due to medical issues...food for him is not cheap)!

We are in the red every month. We are actually making pretty good progress on our Dave Ramsey program and have paid off a number of smaller credit cards but we have an amazingly long way to go! Additionally, we both have HUGE (and I mean HUGE!) student loans still in deferment and (at least my husband's) will be out of deferment soon. But, financially, we are the working poor.

Then there is gas. I drive up & down the state to give our kids treatment. Our younger son has had 2 surgeries in 3 weeks at Shiner's upstate...I cant even count the number of appointments we have had in the past couple months. Both the boys have speech therapy once a week, and one child has OT. There is a center for speech and occupational therapy in our town, but it is inundated with kids and we have been on the waiting list for almost a year with not even an assessment. So, we have to travel to another county ("downstate") to get ST & OT.

I attend a multitude of meetings at school. In fact, while we are waiting for a one-to-one aide for my youngest (currently in a wheel chair), I get to go to kindergarten with him if I want him to be able to attend school. My son with autism requires a constant communication and on-going team meetings with the school as well. When your child has autism, seldom can you get a whole plan for the year set, have everyone follow it, or, even have it actually work for the child all year long. It is all about adapting.

The toll this takes on parents and on a family is immeasurable. The added stress of constantly worring you are going to lose your home, car, or ability to feed your children is absolutely unbelievable, and no parent should have to go through that.

Some countries have a monthly subsidy for parents who stay home with their young children...even if they are NOT disabled. Additionally, these countries often increase that subsidy for parents of disabled children.

For all the moaning and preaching (mainly from conservatives) that one of the main problem with children nowadays is that they don't have a parent at home, that they are in daycare for too long and too early, that (god forbid) mom works as well as dad...etc etc, one would think that there would be some sort of solution to that problem proposed. But, no one that I have heard, in their infinte wisdom of childrearing, has given a solution other than bite that financial bullet & just let your spouse (read husband) work. Well, in today's financial crises how is that possible??

Unfortunately, most parents with children at home who have disabilities are too busy (and sleep deprived) to lobby Washington...and hey, kids can't even vote! So, why worry about them?

Powell on McCain, Obama....and Palin

"I think we need a transformational figure. I think we need a president who is a generational change and that's why I'm supporting Barack Obama, not out of any lack of respect or admiration for Sen. John McCain." former chairman of the Joint Chiefs of Staff Colin Powell....

Powell expressed disappointment in the negative tone of McCain's campaign, his choice of Alaska Gov. Sarah Palin as a running mate and McCain's and Palin's decision to focus in the closing weeks of the contest on Obama's ties to 1960s-era radical William Ayers. A co-founder of the Weather Underground, which claimed responsibility for nonfatal bombings during the Vietnam War-era, Ayers is now a college professor who lives in Obama's Chicago neighborhood. He and Obama also served together on civic boards in Chicago...

Powell said McCain's choice of Palin raised questions about judgment.

"I don't believe she's ready to be president of the United States," Powell said.... [my comment: shudder ]

Powell said he remains a Republican, even though he sees the party moving too far to the right. Powell supports abortion rights and affirmative action, and said McCain and Palin, both opponents of abortion, could put two more conservative justices on the Supreme Court.

"I would have difficulty with two more conservative appointments to the Supreme Court, but that's what we'd be looking at in a McCain administration," Powell said....

"In the case of Mr. McCain I found that he was a little unsure as to how to deal with the economic problems that we were having," Powell said. "Almost everyday there was a different approach to the problem and that concerned me, sensing that he doesn't have a complete grasp of the economic problems that we had."

Read the whole article

Also see: Why Sarah Palin is a Dangerous Woman (great, Whoopi blog post)

Money savings tips I have acquired (and wished I had been using more regularly!)

OK, times are tough for all of us. The budget in this house is being stretched thinner then ever before! So, aside from the obvious (eating out less, buying new things less often, not going on as many “road trips,” etc), I have been looking into some tips on extending the meager dollars that come into our household & I thought I would share with you. This is a compilation of ideas we have come up with along with things I have found at other websites, but I have tried hard not to plagiarize. Where a link is necessary, I have included it. Hopefully, these tips will make it easier for you to save some money too:

• Sign up for customer rewards programs in all stores in which you shop, even if you don’t shop there often. Yeah, I know this is a pain. I have had to add an extra ring to my key chain just to hold all those little key cards. However, I just found a GREAT site to fix this problem: http://www.justoneclubcard.com/ where you can add up to 8 barcodes from your various cards and create just one card! Also, set up a Gmail or Hotmail account for the email so you don’t fill your email account with spam.
• Don’t charge anything that will not outlast the time it takes to pay it off! Boy, I wish we had stuck to this rule when I read it years ago!

• Try to avoid spending a large amount of money to entertain children (see below for some great ideas), except on the rare occasion. Kids, especially younger ones, can be entertained rather cheaply (remember how much fun you had with just a large cardboard box when you where a kid?). Besides, if you start them out with an appetite for entertainment that costs a lot you will be well over-extended once they are teenagers! see: 90 cheap or free ways to entertain your kids and a NY Times article on entertaining your kids when you are out of energy
  

• Clean out those closets! If you don’t like the idea of having a yard sale, head to the consignment shop or ebay (how to sell on ebay link). This will give you more space, take away some of that guilt for not fitting into those pants, and simplify your life a bit.
• Avoid convenience foods (premade foods, microwavable, etc.). I know, this is a hard one if you work outside the home. But, try to move towards freezer meals you make yourself. “Once a month” cooking is a great way to save money AND creates less insanity during dinner-time on the weekdays after work (also can help you buy less take-out and ready-made meals). http://www.once-a-month-cookingworld.com/ When I was working full-time I did a lot of this type of cooking. Now if you have CFS or fibromyalgia, it might not be the best choice to spend the weekend cooking a months worth of meals (can you say: F-L-A-R-E?!) however, one good alternative is: when you do cook a meal, make it double or triple what you would normally do & freeze the balance. Eventually, you will have a nice stash in the freezer, and buying in bulk (larger packages or meats, etc) can help you save money as well.
• Invest in a few (well-reviewed) books that offer budget tips, investing tips, etc., that fit your lifestyle – One that seems to be really well-respected is: The Total Money Makeover: A Proven Plan for Financial Fitness by Dave Ramsey. I actually just ordered this on Amazon and I am anxiously waiting for it to arrive.

• My new favorite site is CRAIGSLIST! It is amazing the things you can find on there. Not only a plethora of yard sales and some free stuff, but lots of other stuff that you might need for your home & family. There is also a “barter” section where people can let you know what they have & what they would like to barter for. We recently got a great (and large!) dining room table for $40 and some retaining wall bricks (we have been wanting to put a small one in since we moved into our house) for less than half the price in the store. They were new, the people just got too many for their wall. We got almost our whole wall finished with these bricks (we need 17 more)!

• I guess we have all thought about it, but I think there is no avoiding it any longer…it is time to start clipping coupons again. I used to do this a lot of in the late 80s, early 90s, but had stopped until recently (I didn’t have the time, it was too much of a pain, didn’t want to mess with the organizing, etc). Since I have started collecting coupons again I have found that a lot has changed! We are no longer limited to the Sunday paper inserts. There are many coupons you can print online. My favorite site is: http://www.couponloop.com/id133.htm (this site has most every coupon online at any given moment; saves a lot of time searching). Also, I found out you can buy coupons on ebay as well. Well, not the coupons per se but the “labor of clipping.” You can regularly get 100 coupons for $1-2 (plus shipping, which can range from $.50-2.00 – so, pay attention to shipping costs). In fact, while I was writing this I just won 100 coupons, all over $1.00 ea for $.99 + .59 shipping. Also, try doing some coupon exchanges with neighbors, friends, and relatives. This is something you can even do through the mail. But, make sure you are using the coupons wisely...see: http://www.grocerycouponguide.com/
  

• Buy a membership to your local children’s science & technology museum. They usually have great kid-friendly exhibits and a cool playground. You can then visit there as often as you wish AND, the pass usually allows you free (or 2 for 1) entrance into tons of other museums all over the country. Many museums have scholarships as well if you cannot afford the yearly pass.
  

• Speaking of scholarships: back when my girls were younger (and I was a single mom) we have very little money to do any kind of recreational activities. The city parks & recreation department often had not only affordable activities, but scholarships. I usually ended up paying a very small fee or nothing for them to participate in swimming lessons, ballet, karate, art classes, etc.

OK, this post is getting rather long! Let’s call it “part one” and I will add a “part two” later.

“Jane”

Are you addicted!?

OK, I have been “shamed” into posting a new blog :-) Things have been up & down for me lately. I guess I have been neglectful. Anyway, here is my BIG tip for the day as part of my “Jane of all Trades” and in the spirit of leading to some sort of recovery of health.

Addictions abound in our world today. However, few seem so innocuous yet in reality are as awful is addiction to over-the-counter nasal sprays. I don’t care what the Mayo Clinic says, those of us who have spend decades PHYSICALLY ADDICTED to these things can tell you that it is an addiction! I had a 20 (yes, twenty!) year addiction to the stuff and I can tell you, it is an addiction!

Most every addict of this stuff knows the drill: one in the car, one in the nightstand, one in the bathroom, one in your desk at work…and so on. You don’t use it every 12 hours (as the directions suggest), but every 4 or 2 or even 1! Without it, the rebound congestion makes you feel as if you cannot breathe. It is not just stuffiness…it is a feeling of suffocation! Addiction seems better than suffocation!

Most know of the possible damage: we are destroying our nasal cavity. Blood vessels can burst in the sinuses the mere cycle of engorgement & shrinking of tissues eventually destroy the nasal passages. “The nasal lining may become atrophied over time. Atrophy is scarring of the inside lining of the nose, which may cause irritation, bleeding and over drying.” http://www.addictioninfo.org/articles/2782/1/Nasal-Spray-Addiction----Know-The-Facts-and-Avoid-the-Danger/Page1.html
It is rare, but sometimes the erosion of the lining is so bad that septum perforation occurs. Nasal surgery may be required when the damage is this severe. I firmly believe that all the dental problems I have with (almost exclusively) my upper teeth are a result of my abuse of nasal spray.

Often the suggestion given to those of us who suffer is to use saline spray instead. Well, saline may help in some ways but it does not even come close to dealing with rebound congestion.

Another alternative that has been created is a hot pepper nasal spray!!!!!

No thank you!

Steroid nasal sprays are often an alternative given my doctors. That never helped me.

Then there is the “school” of detoxing one nostril at a time. That still drove me over the edge! Or, the suggestion of surgery (most often for a deviated septum) however, what you end up with after that surgery is a sinus cavity full of packing. You cannot breathe out of your nose for at least a week! !!!!!

Finally, there is an idea that jala neti, or nasal irrigation: “Nasal irrigation is a personal hygiene practice which involves flooding the nasal cavity with warm saline solution (salt water). The goal of nasal irrigation is to clear out excess mucus and particulates and moisturize the nasal cavity.” http://en.wikipedia.org/wiki/Nasal_irrigation

OK, maybe healthier, but not all that convenient.

But, GOOD NEWS! There is way to get off nasal sprays!! It is actually pretty simple. It takes a little while but it is cheap & relatively painless. What you need is: 1) your brand of nasal spray in a “squeeze” type spray (this will not work with the fine-mist pumps because you cannot remove the top); 2) a bottle of saline nasal spray; and 3) a nail file, tweezers, or whatever you can use to take the top off the nasal spray bottle…you just have to pry it off a little.

Put away, throw away, or otherwise get out of reach any other bottles of spray, only work it one (a brand new, full one). Carry it with you. Put a mark on it, rubberband, whatever so you know which bottle you are working with.

On the first day, use it as you normally would. At the end of the day (or the beginning of the next), open the nasal spray & put about 12-15 drops of saline in the bottle of nasal spray. Return the cap. Use it as much as you normally would, or when needed the next day. At the end of the day open the nasal spray & add about 12-15 drops of the saline spray. DO NOT use any full strength sprays during this time. You can use the bottle you are using as often as you normally would or a little more. But if you use any full strength stuff it will set you back.

Do the same thing EVERY DAY and in about a month you will be using almost 100% saline, if you even need to use it at all!

This actually works!

After 20 years of almost daily use I have been off this stuff for over three years!

Stay tuned next time for a cheap & effective way to get rid of toe fungus…oh boy.

DISCLAIMER: I am not a doctor, nor do I play one on TV. Before implementing any of these suggestions see your healthcare provider. Seriously. And don’t blame me if you haven’t checked with the doctor first!

recovery...

WOW! I had the best intentions to start chronicling my recovery (because I finally feel as if I am starting to have one!) but I have been to the specialist four times already and haven’t blogged anything! So, here goes….

I am so grateful to have discovered a Functional Medicine specialist in my area (about 1 hr away) who also takes my insurance. My first visit was an hour and, he actually READ the patient medical history form I had filled out. In fact, he highlighted and made notes all over it. There were so many issues he discussed with me…and then he said that we will have to tackle them slowly.

It looks like I have a genetic defect in my body’s ability to manufacture Serotonin at an appropriate rate (which is further supported by the fact that my mother and my daughter both have serious mood disorders). I also have thyroid issues (which I already knew) but being on a T4 synthetic thyroid medication for so many years has thrown off my T3. I most likely have an adrenal problem due a life of extreme stress, beginning in childhood. Additionally, it appears that I might have pernicious anemia (a B12 anemia). There are many other things I haven’t gone into here (IBS, hormones, etc) but I will address them at a later date.

First visit: B12 injections daily for 10 days, Nystatin 500,00U 3X per day, and change my Synthroid to Amour Thyroid 60 mg 2X day (a natural thyroid with T4 & T3, as opposed to synthetic T4 in Synthroid).

It took a few days to see any results but I actually started having a little more energy. However, after the 10 days of injectable B12 ended, I crashed. I called the Dr & he said to refill the rx and we would discuss it on our next visit.

Second visit: Continue the daily B12 injections indefinitely, add 50 mg 5HTP @ night to compliment the SAMe (600mg/day) I have already been taking.

I started noticing a difference in my mood after this visit. I started sleeping a little better and I could tell that I woke up in a better mood, however, that wore off in the late afternoon. I also had a yeast die-off reaction at this point as I started eliminating most sugar from my diet.

Third visit: add 5HTP in the morning to continue the effects throughout the day, ketoconazole 200mg 1X per day for 10 days.

In-between the second and third visit I started taking my Amour Thyroid sublingually. It has helped immensely! See the following for some information on this:

http://www.stopthethyroidmadness.com/

http://www.stopthethyroidmadness.com/natural-thyroid-101/

http://www.stopthethyroidmadness.com/sublingual/

For the first time in years I could tolerate a room less than 72 degrees. My tinnitus is getting better (though certainly not completely gone) and I am feeling a little more energy. My cognitive function has slowly been returning since my first visit. Adding the second dose of 5HTP helped a lot. I am not sure how much the ketoconazole helped.

Fourth visit: add Iodine/Tyrosine 225mcg/500mg 2X day & plantizyme w/each meal.

Apparently, the Tyrosine helps with dopamine production which in turn, helps with norepinephrine and epinephrine, and it will help the B12 & SAMe work better. The iodine assists the thyroid and the plantizyme helps with digestion.

Another change I have made was to my diet. I realized the other day I have been on some diet or another off & on (mostly on) for almost 30 years. I cannot stomach the idea of eating like a rabbit again (pun intended) and if I have to count any more points I am going to hurl! A way to eat that, intuitively makes a lot of sense to me is outlined in a great book by Sally Fallon: Nourishing Traditions (http://tinyurl.com/44ywnw), and a book that I am anxiously awaiting for in the mail is A Life Unburdened: Getting Over Weight and Getting On With My Life chronicling the comedian Richard Morris’ weight loss journey (losing 150#) using this type of eating (http://tinyurl.com/4u6zsa). I do not know if this will be the weight loss miracle I have been wanting all my life…and I no longer care. I feel better, my whole family is eating better, and, I haven’t gained any weight which is something …if you only knew what I ate! And, I know as I become more able to exercise and be physically active, the weight will come off.