A NEW EARTH

Yes, I'm one of the 800,000 people taking Oprah's online class for the book "A New Earth" by Eckhart Tolle.  

I'm not usually one for following the crowd but since all these health issues and hardly having a life anymore, I've been looking for something more spiritual in my life to help me get a grip on my situation.  

I had read the book Oprah recommended before this one which was "Eat Pray Love".  And it's a wonderfully written non fiction story of a woman's journey during and after her divorce.  Something I'm familiar with, a nasty divorce over 15 yrs. ago.  But the book was one of the best written books I have ever read. 

 

So I thought maybe I'd pick up this A New Earth book to try also.  I don't always read the recommended books from Oprah, I rarely can stay awake reading period!!  So I started trying to read this book looking for answers for my own life.  Wanting to change the way I look at things because pain and health issues can create a negative monster or as this book would say, I created my own monster. 

 

I will say it is not an easy read for me anyhow.  It is a book that if you are not in a place where you are open to new awareness of your spiritual self, it won't interest you at all.  Or maybe it's just not time for your "journey". 

 For me however, I've had to read and reread the first chapter at least 3 times and I've joined a book club that many people also said the same thing.  It gets easier after that.  It's a hard book to explain except it speaks how we let the ego in ourselves make our lives and decisions instead of letting our unique selves be present in the moment to make that decision.  You see, it is hard to explain but for some reason, I get it.  Maybe it's my time for that journey.

Oprah has a class every week you can join with the author that helps explain things further.  I don't find that this collides with my Christian beliefs, as a matter of fact, it seems to help me look at God's word even more deeply then before. 

 

I would recommend this book if you're looking for peace in your head from the many thoughts that invade us.  It's been an eye opener for me.  I see how I've helped create a lot of my stress and silly thoughts that stab and wound my very being.   

I will try to update as my journey goes on.  My goal is to totally stop thinking and talking about my health...which is going to be hard on this blog since most of it is about my health.  

DISABILITY PAYMENTS

So this is March 2008 and today I was informed that it will be March 2009 before I receive my first disability payment. So in July 2004 I stopped working, it took 3 yrs. to get a court date and I had to go twice. Now, I have to wait another year to get my payments started.

This is why we have disabled homeless individuals. Who is supposed to take care of us for 4 yrs. while all this paperwork bungle goes on and on?? FOUR years. By that time I hope God creates a miracle and cures me so I can make some real money. This has proved once again how the government will jump right in to help out. Ok, so I'm being sarcastic.

I'm wondering if Kansas is the only state this far behind on court dates and payments. If I hadn't met my husband of two years, I'd still be living in a Veterans Assisted Living Home waiting another year for my measly, and they are measly, payments.

What ever happened to my life I dreamed of? How did my health take over!! You know what...

THIS IS NOT THE LIFE I BARGAINED FOR!!!!!

DISABILITY APPROVED (AFTER 10YRS)

I couldn't believe it when my husband phoned me. I'd just come out of the Vet Center for Counseling and he phoned to tell me I had a thick package from Social Security. He went ahead and opened it to inform me after 10 yrs. of trying to get approved for disability; I had finally be granted a fully favorable decision. I couldn't even get really excited anymore. Of course I'm grateful.

When I was young I could never have imagined I would be so ill I couldn't work. I went into the Air Force and was going to make it a career. But it wasn't long before I fell really ill although I did trudge along for 6 yrs. before finally going down hill so much, I had to get out.

Disability is not something people strive to have on their resume of life. I know few who said to themselves; "when I grow up, I want to be disabled". It's hard sometimes when people ask what you do for a living or you attend a high school reunion and they want to know what's going on in your life. You really have to think of something to say. My husband has an Ebay store (http://web.mac.com/brendazbiz/Brendazbiz/Home.html) so I use it as an excuse to say "We work out of our home". I don't want to say, "I'm disabled".

It's not that I'm embarrassed, it's just that people start asking about your illnesses and then they get this look on their face; compassion or sometimes pity. It's really just too exhausting to explain because I have a few of those "invisible" illnesses. Fibromyalgia; Chronic Fatigue Syndrome and Arthritis. I used to be able to dance through the night, now I'm lucky to walk a brisk 10 minutes. It's very frustrating to see others with careers or going back to school and some days you can barely make it to the Living Room just to sit up a bit.

I'm going to feel better having some money come in to help with expenses. I've been fighting those worthless feelings you have when dealing with these illnesses. I just keep faith that some day I'll be better and can once again get out in the world.

I'VE BEEN REVIEWED

Well, it's so exciting to get an email from another website saying they've done a review on you and they've added you to their site. At least is was for me. I was reviewed at http://www.peoplesmd.com/.

Here's just the small blurb they mentioned about my blog. (It still thrilled me)!! "We found this fibromyalgia blog to be among the most current. The author, self-described as “a mother, wife and simply a woman who stays at home with some health issues” shares this very personal blog, with good information and an very honest perspective on her condition."

I had read about this site on another blog just a few weeks ago. It's different from other medical sites because it has a place for Health Heroes. These are people who have blogs; personal guides and other sites that donate their personal health journey.

Here is part of PeoplesMD mission statement to explain what they are accomplishing. http://www.peoplesmd.com/static/mission_statement

"PeoplesMD is revolutionizing the way health information is organized on the web by empowering consumers, health professionals and organizations to identify, share, and rate the best health resources online.

On PeoplesMD, you play a valuable role in determining what information is most important, practical and useful for any health topic. Now instead of your health experience online being dictated by a Google algorithm or anonymous author, there's a site filled with great health links and personal guides by and for people with real world expertise. We call these people our Health Heroes and we invite you to join their ranks by quickly and easily sharing your favorite links and resources."

Sometimes the best information is from others who are also experiencing the same illnesses. There are Health Hero Topics; Medical Topics and Health and Wellness Topics to explore. You can also create a profile and if you have a blog that fits this site, you can apply to have it accepted there.

I appreciate them adding my blog to their site.

CHRONIC FATIGUE SYNDROME

This is a great video recorded by Christina Celeste who also has a site that discusses this and raw food plus other aspects of CFS. Here she talks in depth about some of the symptoms of Chronic Fatigue Syndrome. This is the first illness that hit me over 21 yrs. ago when they had no name for it and no books on it. Back then it was termed the Epstein Barr Virus. I had no idea what was happening to my body, but I seriously thought I was dying and no one knew what it was. I remember seeing Cher on a talk show talking about her symptoms of Epstein Barr and thinking to myself; could this be what I have?

CFS is an underrated illness that will totally and utterly destroy the life you lived and the life you dreamed you could live. I also have Fibromyalgia and it can be hard too, but CFS can actually cause seizure like symptoms or like me and Christina Celeste, we became paralyzed. There were times my legs wouldn't work and if I was walking, I would just fall over and couldn't get back up until my brain decided it for me. I might be drinking something and my arms would fall and I couldn't will to lift them until the brain decided it for me. My eyelids would close and I couldn't open them until the body was ready. Driving became too dangerous. The overwhelming; unexplainable exhaustion was too intense to work. So many other symptoms; pain; numbness and feeling like needles were being slammed into your skin at 1000 miles an hour is the kind of pain that has caused others to take there own lives.

This is one of the saddest illnesses I have ever studied and the lives totally interrupted by it. The dependency you have to have on others is usually too much for them and because you look "normal", people think you're making it up. I remember the first time I saw the first book ever written on CFS in a small library in Bellville, Ohio where I lived for a few years. I told my kids we couldn't stay any longer because I felt the exhaustion coming on and turned around and there it was... a top ten seller. I told my son to go get it for me and put it on the counter. The woman working at the library looked up at me and asked me why this book. I proceeded to tell her I believe this is the illness I'm suffering from and all of a sudden; she burst into tears.

I thought what did I say? She looked up and then said, "my husband just left me because of this illness". I told her I also had just gone through a divorce and was sure this had a lot to do with it. All we could do was hug each other. She was the first person I had met that had some of my symptoms. I felt so sorry for her. I knew how it had changed my life and the life I had.

This was the illness that made me give up my Air Force career. I had been in for 6 yrs. and was enlisted doing an officer's job so my Commander had helped me to get accepted into Officers Training which meant I had to go finish college to become an Officer. But right before that I started having to hide and fall asleep. People couldn't find me and one of my bosses was hiding what was going on with me. At the same time, I was getting married and that's the "excuse" I used to get out of the military. The truth was my Commander had noticed and informed me to either find a way to get out with the Honorable Discharge I wanted although he suggested I do a Medical Discharge. You know the Medical Discharge would have really helped me and I did not know that. I was a proud Air Force veteran and wanted to leave with that Honorable Discharge and I did. Today I'd give anything for that Medical Discharge.

What I wouldn't give financially for that "retirement paycheck" I never got to earn. I've done what others did with this illness, sometimes I could work but was sick alot and skipped around jobs so not to be fired or I just didn't work.

I still don't have disability pay and was a single mom for 15 yrs. of this illness. When I look back, I can't believe somehow on almost no money, sometimes welfare which I never dreamed I would be on, I did it. Unfortunately I don't remember some of it either because of the memory loss incured with it. The guilt you feel over it and what it takes from your children is a whole other post!!

This is a very serious illness and is taken seriously in other countries. It's time America wakes up and recognizes this illness. I know just last November 2007, that Social Security Disability has finally admitted it as a "real" illness. It took me 11yrs.; 36 doctors and countless tests to get my diagnosis. This, ladies and gentlemen are some of the symptoms of the most devasting illness I've survived; Chronic Fatigue Syndrome.

CHRONIC FATIGUE SYNDROME SYMPTOMS-CHRISTINA

67 DEGREES

Just a short post today. Ok, they are never really short.

It's been a busy day for me which means I made a trip to the grocery store. This is a good day for me, just purchasing groceries. It's a balmy 67 degrees out after snow just a few days ago and tonight we may get 5 more inches of snow. Kansas weather is never a guarantee.

You know I was standing in line with my groceries checking out. I bought mostly fresh fruits and vegetables and a few cans of vegetables and a package of chicken breasts. I had a lot of vegetables because I like to make a huge stock pot of vegetable soup sometimes.

I was also in the "store" where groceries and everything else is supposed to be the least expensive...you can guess...it's a mile hike across their store. Not good for us fibromyalgia; arthritis people. Anyhow, the cashier says, "that will be 115.66"!!! I said, "WHAT, over 100 dollars for healthy food"!!! The lady in line behind me than decided to join in. She said to me, and I'm not kidding, "you know my daughter lost weight just by cutting calories and exercising".

So, I guess she thinks I'm overweight in her eyes. The truth is I am overweight, not mostly by choice. I have to take several medications that consistently put weight on me. As a matter of fact, 20 yrs. ago I was in bodybuilding shape as a female and I do know how to loose weight. The only problem is my body has to stay on these drugs to work. I have a medication for my thyroid to make my hormones work more evenly, I take an antidepressant that helps keep the pain of fibromyalgia in control (most the time), I take a pill that acts as a "pacemaker" to make my stomach contract because it doesn't work on it's own and this is a serious condition, I take muscle relaxers to stop my other muscles in my legs and arms from spasming all the time. Odd that they spasm and the stomach won't contract. And there's several other meds also. All these I have tried to go without and found that my body simply won't function without them. I'm grateful they have them.

So as this woman was telling me how to loose weight, I interrupted her (first I thought it was rude), and just mentioned that I had to eat healthy due to some health issues especially stomach. She said, "oh, there's things I'm not supposed to eat either, but I do". I explained to her that it's not like that with me. If I eat something I'm not supposed to, I end up in an emergency room begging them to put me down. The pain is unexplainable. What I miss most is corn on the cob. yummy and dangerous to me.

I just found it odd that she just assumed I needed to loose weight and that I would be ok with her mentioning that. God knows I would give anything to loose the extra 80 lbs. these drugs have pushed on me, but as much as I've tried with what you can do with these illnesses, nothing has worked. My only hope now is that I just started about 4 weeks ago on the thyroid pill. Maybe my metabolism will finally start kicking. I can only hope.

So the next time you see someone who is overweight, realize that yes, maybe they over eat or just maybe they have painful, debilitating illnesses that don't allow them the Priviledge of being who they truly want to be and that is healthy and in shape. I don't mind telling you after starting out with beautiful weather and an ok health day, her words to me brought me totally down and reminded me of how I must really look to other people.

And to think, I used to be a beautiful thin (but not sickly thin) model and danced my nights away. Today, I was lucky to get through the store and get my groceries. But not so lucky in the choices of people who once again opened their mouth before they thought it through. Too bad she didn't follow me out to the handicap parking!!!

DISABILITY COURT

Today I went to my 3rd disability court hearing. I've waited 3 long years for a court date.

The court system seems odd to me. Very cold in some ways. I mean first you're expected to not work for at least 1 year before Social Security will even consider you for disability. Then when you get through the horrible very time consuming paper work, more than likely, you are almost always turned down the first time. By this time you haven't worked for approximately a year and a half. Some people have a support system to fall back on for this, but I didn't.

I was a single mom trying to make it just one more year knowing I was getting very ill. My youngest son had just his senior high school year left and I simply wanted to get through it. But my body had other ideas. Right when his school started I ended up moving into a Veterans Assisted Living Home. Not the best place for a younger woman to be honest. Not very safe. Where was a single mom who had no family near to go?? Luckily, my youngest son could move in full time with his dad and stay in the same school. I on the other hand was wondering if this is all there was going to be to my life now. Even disability wouldn't get me an apartment. Needless to say, I was depressed with no home for my boys to come to. So hard to have them come visit you in a 5x8 ft room that you may end up sharing with a roomate. I could have had a home, if I wanted to live 5 hours away. That was too far for his school year. I thought, maybe later. And of course, prayed to get better.

Living in the VA home, I applied for the 4th time, by now, for disability. Turned down again. I thought, "how ill do you have to be to get this"?? It was the lowest time in my life. But something interesting I noticed was that of the 5 women in there and over 60 men, the men were getting their disability every time and we as women, were turned down. I spent 9 months in the home before I met my now husband who lived near my son. Saw a story about him on the internet and wrote him never realizing he would be the man I'd been looking for over 15 years. It was my miracle.

We married and I still couldn't work and I had appealed my non-favorable decision. I finally hired a lawyer ( I had done this before) and that was over 3 yrs. ago. It took 3 yrs. to get a court date. It is now almost 4 years since I've worked and now I'm waiting for someone who only asked a few questions from me and had me in the court room only 45 minutes to make a decision on something he doesn't even know has affected my life so deeply.

They don't want to know your story. They just want facts. But so much of your life is wrapped up in these illnesses. It affects every single decision you make every minute of the day. Can I go up or down the stairs one more time? Can I make it out of bed just to eat something. How do I take this pain today!! And on and on goes every decision. You want that Judge to know how much you've suffered for a life you didn't bargain for. You want to explain to him how much of your life has been stolen from you because of these illnesses.

They are not interested, they simply want you to quickly answer a few questions and they will move on to the next person.

I pray I don't have to go through this again. I've actually been applying for disability for 10 yrs. even though I was working, I had met some men (notice it was men) that got disability when they were working with the same illnesses I have. That obviously never happened for me.

The guilt I feel over not being able to bring in my own money to my new family is never over. The worthlessness that can overwhelm you from feeling like you don't contribute is all consuming. But the pain of the illnesses is relentless....never stops. Now, at this time in my life when my oldest son has graduated college and the youngest one has 2 more years and they both live in Arizona, I would give anything to be extremely healthy. I could go do things I dreamed of when the boys got out of the house. I could go to Arizona and hike the mountains with my boys, that would thrill me to be able to do those kinds of things.

I would rather not be on disability because after all....it doesn't pay enough for feeling worthless.

THYROID!!!

For over 10 years now I have consistently asked the various doctors I have at the Veterans Hospital; "are you sure it's not my thyroid"? For the last 3 months I've been so exhausted. I thought maybe my Chronic Fatigue or my Fibromyalgia was coming back full force. But no, it finally happened. My thyroid numbers finally went high enough to start me on a thyroid pill called Levothyroixine. I have hypothyroid. Since starting on it a few weeks ago, things are happening I'm not used to.


My joints don't seem to ache much anymore, I'm not hungry all the time, my sinuses seem clearer, even my mind fog seems clearer, the numbness and tingling I have in my legs, feet, arms and hands seem to have gotten much better, a little thing called a sex drive is showing back up, but mostly, I seem to be having more energy. As a matter of fact, not that it's back to normal energy, but more than I usually have; that I've been so long without it, I can't remember what to do with it. I find myself pacing through the house trying to remember what I used to do over 21 years ago before getting ill. This week, I decided to paint my kitchen.

I don't want to get my hopes up but I'm wondering if all the health issues I've dealt with since I was young could have possibly been this hypothyroid. From what I've read on it, it can show up even as a child, but not have any effects until you are older. I've constantly questioned for 21 years now, do I really have Chronic Fatigue Syndrome and Fibromyalgia? Is this what God has planned for me? Because I gotta say I haven't been thrilled with the outcome. Constantly tired, missing out of a lot of life, sick all the time and finally not able to work for the last 3 years. Yep, I don't want to get my hopes up, but what will happen if after all this, it's simply my thyroid? Could it be possible to actually start exercising again and go back to work?? This would be a prayer answered.

I've met others who have felt much better after getting their thyroid pills. Their health has gone back to normal except for one of the terrible side effects which is freezing hands. My hands are freezing cold all the time now. Before I started these pills, my hands would sometimes get so warm, my dog wouldn't let me rest them on him. I do feel different. Not sure how to describe it. I just know it's nice to have some energy. Without energy, your whole life suffers. You can't go out with your friends all the time, play with your kids, go to stores when you need to, go back to college and the list goes on.

Mostly, it makes you feel guilty for not being able to keep a promise. Not just to others but mostly to yourself. A simple promise like telling a friend you will meet them for dinner and then your body fails you. I've tried several times to explain to people what it is like to be a prisoner in your body and no matter how much will power you think you have, your body still can control you and your mind in the end.

I'm trying not to get my hopes up that I might be so normal I could finish college at age 51!! Go back to work and earn my own spending money!! I'm trying not to get my hopes up; but of course, I already have.