We Dont Need Permission to Voice Our Pain!

I dont know about you but I have long since struggled with the "acceptance" part of my condition. I mistakenly thought accepting it would somehow cement the fact that I was weak, less capable, less important or just "not normal". That if I accepted it all of a sudden a right light would be shining on me and everyone would know I am no longer the person I used to be, or I can no longer do all the things i used to do. Well as you may also have also seen in an earlier post (one of my favorites) I came to terms with that aspect. As I hope everyone does at some point.
 But, and this is a very big but, part of me has still been off. I talk to myself, I question myself and its taken me a while to figure out. But I have waiting for permission to be sick. I have been waiting to hear from a mystical unicorn that its ok to be sick, tired and angry. That its okay to sleep, cry or go slow. I needed some ONE to listen to my ramblings without judgment, and since I don't/didn't think it's truly possible NOT to be judged I have always been holding back my thoughts feelings and pain...just a little, while I wait. Wait for something I don't even think can happen, so I have been left perpetually feeling vexed.
 I have exhausted every avenue, done everything I was told, researched until my eyes bleed, exercise, eat right, try everything under the sun to manage and even accepted, fight or give into my body,  and still feel something is not right..it required further investigation.

My investigation has lead me to my epiphany, that I am looking for permission. Permission to say and feel everything I have been holding back. I talked to myself in the car for a very long time and said all the things I would NEVER dare to say out loud (for various reasons) and it felt great. The world did not end. No one fired me. No one judged me. I was not asked for a divorce. No one died.
I thought OH HELL if I heard this from any normal person I would gently suggest they seek immediate counseling. But  pain changes people. A chronic pain patient can say these things and I would never suggest they were crazy. I would break down and sob because I knew exactly they feel. If we want to get through it, over it or around it we have to VOICE the good, the bad AND the ugly.

If you have ever thought anything similar and were to afraid to say it outloud you might want to try it. Even if no one ever hears it you have every right to think and feel it. No matter how crazy. You know it may be temporary, not true of your everyday nature and you may feel guilty about it but know YOU CANNOT be the only one. And if there is one (me) there is more. And if there is more, its NORMAL!!
It doesn't make you a bad person!!! It makes you human.
So although I love life, my family and friends of course there will times when I dont! Of course! Are you kidding me?! Chronic pain changes EVERYTHING!
That old saying "Pain is Temporary" was not meant for those of us who's pain NEVER, EVER goes away.

It is not temporary when your insides feel like they have swallowed all the pain, from all the souls in, all the world.

No one can tell you what an appropriate response is to that kind of life. 

I don't need permission!This is how I can feel on any given day and I HAVE THAT RIGHT!

Judge me or relate.

On my bad days....

I wish I had no kids. I wish I never had to take care of  anyone at all ever! I resent getting up everyday to pack a lunch. I wish they could put themselves on and off the bus. I wish I had a nanny to do everything for me .

 I just want be left alone. Left to eat or sleep or cry at my whim. Never work, never workout. I pray God will give me a new body. Then I pray someone would die and miraculously switch places with me so I can live out the next 50 years in a "real" body.

I wish my husband would just go to work and never come home. I don't want the guilt of not being a good enough wife. It wouldn't matter if I cleaned or cooked. I wouldn't have to go places I don't want to go, or even be intimate when I am never in the mood anyway. He'd be better off. I wish my friends would go away because they are useless anyway. They aren't there when I need it and they can never understand what I'm going through. 

I wish I was dead. I wish I could disappear. No one cares about my constant complaining anyway.

Sometimes I dont take a shower for days, even weeks,  because I'm too depressed to take care of myself. Sometimes I only do the birdbath because it hurts too much to climb over the tub wall.

I only get dressed up for things so no one things of me as "SICK" when they see me.

or I dont really care to be dressed up all. What the for? Maybe if I look like crap someone will know by the outside how bad I feel on the inside and I'll get some freekin sympathy!

 Rain hurts, clothes hurt, stress hurts, noise hurts, working, smells and washing my hair hurts. Even resting hurts! 

And I dont know how anyone can have pain and despair for the future and still be living.

So again, even when I am generally a positive person, trying to encourage others, and being my own cheerleader OF course there are days when I want to say "F%*@K YOU" to life! F you to health insurance, F you to the doctors office, F you to pain, the dog, the mailman, the tv and anyone else a very BIG F YOU to everyone who asks if I've gotten any better!  Just yell it out, let go and move on And if you need to do the same, go right ahead!  I would not judge you!! EVER!! Because you DON'T NEED PERMISSION!! You earned it by getting up every morning and putting that foot on the floor! 

I Am Fibrotastic!

In my early 20’s I became increasingly more fatigued than I had previously been. My concentration was off. My muscles were sore all the time. I did not sleep well, and felt as though my life was always moving too fast and it took all my energy to keep up with it. I was trying to juggle a small child, college classes on and off, parties with friends on the weekend, and I worked. Sometimes multiple jobs. So when I looked for a reason why I felt the why I did, it was obvious. The stress of being a young single parent and all the responsibilities that come with it was always number one on the list. Working at a health club, babysitting weekend nights and staying up all night were all next in line. I went to counseling to learn how to manage my life and although somewhat helpful, I was told I had Adult ADD, that I was bi-polar, and had manic depressive tendencies. No thanks. I didn't like that but what can I do. They are the doctors right?

 Don't they know best? After trial and error for years with multiple medications, lets face it TONS of medications and lifestyle changes nothing ever really improved. So I gave up.

In my early 30’s when my second child was a year old I came down with meningitis. After this episode I never seemed to fully recover. Widespread body pain and fatigue were ruling my life. Most days I was forcing myself to stay on my feet and get through the day, get chore done and not look weak or lazy. I was now married and had more responsibility and could not figure out why life seemed so unfulfilled. Yet another year later the signs of meningitis reared its ugly head and I was back at the hospital for a second time. Who in the world ever heard of such a thing?! By now I think I am a medical mystery, an anomaly. I am messed up! I began to do less and less of things I enjoyed, became anxious in certain situations, withdrew from friends. I suffered from injuries and winter illnesses that seemed to never want to heal or go away. Headaches and pain were at an all time high. I finally decided something was wrong with me and it must have been the meningitis.

I searched the internet, read books from the library and although I realized I do in fact have ADD, there were too many other possibilities out there for me to diagnose myself with anything. Finally I decided I didn’t know what was wrong with me but I knew changing my diet would be nothing but helpful. I did that and no change really made much of a difference. In between numerous doctors’ appointments with dismissive answers, my in home daycare children, foster children and my own third baby, I ended up having to scale back, and eventually quit everything to just sit home and be sick. I felt like a failure and a loser. I felt weak and ashamed that my body could not keep up with everything my heart wanted to do. I gained weight, lost hope and became very angry. In seeing a Rheumatologist for another injury, he quickly changed his line of questioning, did the tender point test and diagnosed me with Fibromyalgia. I went home searched the internet to find out exactly what that was and then had my greatest A-HA moment in years. I was so  happy to have a diagnosis that validated me. Now I knew what was wrong all these years! I was not crazy! I was not lazy. I was not being a drama queen and I WAS NOT making it up!! Happy happy joy joy!!

Then I cried. For a long time. Like days..in the shower, in the car, in the bed....It seemed I was doomed to a life of pain with no help or cure in sight. The emotional fallout was much greater and complicated than I can ever put into words.  I ended up on disability and just plain miserable.

At 39 I decided to try diet change again but his time be more strict. The information was mostly incomplete and contradictory and the only common denominator I found in hundreds of hours of research was diet. Maybe helped a lot or a little but it was obvious that was a factor. No artificial ingredients, no caffeine, gmo, hfs, etc. and as little processed foods as possible. As clean as I could afford. I even cleaned out the house of chemicals, hair products, tore up carpet you name it. I went all out. This time it made a noticeable difference. Right away I felt like I had a little more energy, and I was less heavy, angry and also has fewer digestive issues. I felt good enough to start running and working out again, where I had done in the past, but then it became too painful. Shortly after, bringing my youngest to preschool I met another mom there who was a doctor. We got a little friendly and after a few of my side handed comments like “I’m always so tired” and “everything hurts” she  said she would love to see me (as a patient) and try to figure out what was going on. I declined for a while. Beside the fact that it had the potential to be awkward, I was suffering from doctor fatigue. I did not want to go through that anguish of hearing “its tendinitis, I have to lose weight, it will go away eventually, or all new moms feel like this”. Eventually winter had destroyed me yet again and I figured what do I have to lose?

She did testing no one had ever done before. I had Fibromyalgia for sure, but also some overlapping Chronic Fatigue Syndrome, I was hypothyroid, and had Adrenal Fatigue. Other side conditions from the high stress and wacky hormones also developed or had become worse, like TMJ, depression and anxiety. Throughout this process I discovered it all led back to the birth of my first child. I had been living with this for an astonishing 22 years, all the while it was getting worse with every stress or trauma. She put on supplements specific to my needs based on those tests and a thyroid medication. I exercised a minimum of 30 minutes a day, 5 days a week. It hurt. It was not easy. But every day I could do a little more and a little more. Sometimes I cried while I ran around the track, other times I yelled at the tv and cursed the maker of the dvd, but my it was helping me. I could see it and feel it. And combined with the healthy diet I felt like a human again. I decided to be in control. If I could not cure it I would mold it. I was in pain anyway, so I decided I would benefit from it by building a stronger body for it to live in. Feeling sore from a workout is mentally and emotionally more empowering than feeling the pain from Fibro itself.

 Although there are “flares” and bad days still, they are happening less and less often. Overall life is much better. I have less pain and less depression. But those days are fewer and fewer. I was able to start working and start a support group. I am running and participating in obstacle course races and feel great most days. I started an organization for people with who suffer with chronic pain who also stay as active. They get together for events, give support, suggestions and share stories of accomplishments. I never would have been able to get any of this done without educating myself, having the support of a good doctor and a supportive family.

My advice to anyone is to know you are you are important. Your life matters. No one will fight for you as hard as you will fight for yourself so do not give up. Keep looking for the right doctor, vitamins, or exercise. Try everything alternative as well as modern. Know it will most likely be a combination of things that help, just as it is a combination of things that are making you ill. It may take months or years but it’s worth it. You have to form a front of every level. Physical, emotional, mental and spiritual so it has no chance but to back down. I know it hurts. I still cry. I still curse the gods. Its okay.

JUST DON'T GIVE UP!

Don't Worry Be Happy!

Sounds easy when its in a song right? Harder to practice in real life. But you can. You can practice and you can be happy. Not every minute. Its real life for crying out loud..but more than you are now!
Okay this is my speech for the day because I am just so moved to do so..I posted this last night on a couple of my pages, and got little response.

" It is important to remember that your own thoughts and beliefs do manifest themselves physically, and can affect your overall health and mood. 

Start changing your mentality today by starting your day off with positive imagery. 

You can also ponder on the many ways in which you can use your own gifts and talents each day to better the world and create the change you would like to see in your daily life."    

This is true. Like being nervous can cause you to sweat or have to pee! Like getting embarrassed can cause you to blush! The chemical makeup of happy tears are DIFFERENT than tears of sadness! The list can go on..you get the point. There are proven physical reactions to your emotions. 

That reminded me (even though I don't like to make generalizations), it is in fact true, that there are majorities of people in the general populous that act or think a certain way. I have to say not a lot of people are PRO active.This is not for the people who are very engaged in their health and stay informed educated and try everything they possibly can. There are those of us who do EVERYTHING and then some. Kudos to you all!! But there are those who are NOT.  Those who are in real true pain, so bad they can barely function. And do nothing about it. Those are the ones who make me very extremely sad for their future, because they dont even think they  have one. They have lost hope and  are too tired to do anything except breathe.

 They are REactive. And so often I hear "I cant, it hurts, you have no idea..." And I get it. I of all people get it. But you have to be proactive if you want to have success. Especially us with illness. Quit smoking, skip that soda, don't let people get you angry, learn to let it go and take your emotional and mental health into just as much consideration as you would a child who fell off a bike.If it hurts don't give up just do less, do it more slowly or less often, but it will ALWAYS hurt if you don't try at all. Do you need those oreos?  Do you have to get revenge? Do you have to turn your stomach over things you cannot control? Not really. Just realize for everything you do there is a consequence. Weather its an extra 3 pounds, a flare, prolonging an argument with someone, stiff neck or a missed appointment and now you have fee's that you cant afford to pay...there are physical reactions in your body and you need to do whats best for your body. Make the best decision for you and be happy with it. Use your ability for independent thinking and use those emotions to better yourself. Don't take on the negative energy from those around you. Release it back to them.YOU HAVE TO. you owe it to yourself. So walk 5 minutes, stop sucking down the diet soda by gallon, read about emotional healing, take a yoga class, empower yourself to get a new doctor, make that call you have dreading to make, forgive yourself and don't expect perfection, ......DO WHAT EVER it take s to move FORWARD! DO NOT GET STUCK!! YOU ARE NOT YOUR ILLNESS!! YOU ARE SO MUCH MORE!!

Quitting coffee is easy...said no one EVER!

A long time ago I said I'd touch on what awful terrible things happened to me when I quit coffee and never did.  I have a few minutes so I'll be brief.
I quit coffee during pregnancy. I had headaches and it wasn't very pleasant but I lived through it. Also knowing I could start back up again after breast feeding was my light at the end of the tunnel. Back in April  I decided to go hard core healthy and clean all up the last remaining stragglers from the last time I went "healthy", coffee, Chinese food, soy ingredients and occasional Mojito with the girls...I figured I'd get the headaches without the coffee for sure. I have Adrenal Fatigue so it was clear I had to go the NO caffeine rout.

Day 1: great




Day 2: slight headache
Day 3: severe headache
Day 4: Migraine from the dark angel himself . Kill me now.



I had fever, chills, shakes, nausea, and a migraine. I was sensitive to light, sound and even vibrations.I thought I was going to die. My forehead felt like it was sliding off my skull.

I prayed and prayed for it to be over. I was in bed for 2 days. Finally My sinuses started to get congested and then my nose was stuffed u it felt like it would explode right off my face. After texting with my doctor for a while day 7 we come to realize I had the dreadful pleasure of also having a sinus infection to go hand in hand with my withdrawal symptoms. Who know which was happening first, but they definitely worked hard to make the other worse, and they worked great together to make me sick enough to wwant to die. So needless to say, I will about once a month treat myself to a cafe mocha , but I can never go back! EVER!



Caffeine is a classified drug and reacts differently from person to person. While some people can drink up to 10 cups a day, others get a jolt from just one cup. The medical consensus regards caffeine as less of an addiction and more of a physical dependence.

In an inhttp://news.nationalgeographic.com/news/2005/01/0119_050119_ngm_caffeine.htmlterview, Griffiths said that the studies had demonstrated that people who take in as little as a hundred milligrams of caffeine per day—about the amount in half a cup of coffee—can acquire a physical dependence that would trigger withdrawal symptoms.

"Although most regular caffeine users know that caffeine is a mild stimulant, many are not aware that abrupt cessation can sometimes produce unpleasant withdrawal symptoms," Griffiths said.

"With regard to severity, 13 percent of people had clinically significant distress or functional impairment," Griffiths added. "At its worst, caffeine withdrawal involved missing work, canceling social functions, and going to bed with the belief that they had the flu."

A study published by theJournal of Analytical Toxicology found that nine out of 10 tested cups of decaf coffee from coffee from shops and restaurants contained 8.6 mg-13.9 mg of caffeine. It also found that decaffeinated espresso shots contained 3 mg-16 mg of caffeine per shot. Another study done by Consumer Reportstested 36 cups of small decaf coffees from six locations. They found that more than half had less than 5 mg of caffeine while the rest had a range from 20 mg-32 mg per cup. Depending on how much you consume in a day, you can end up consuming more caffeine from decaffeinated drinks than you would in one cup of coffee.http://www.medicinenet.com/caffeine/article.htm

http://www.naturalnews.com/012352_caffeine_coffee.html