Saturday, November 27, 2010


It's funny how things change.
Life, Ideas and Beliefs.
Time can heal all wounds.

It was Thanksgiving Day and it was going to be a long day. The pain had started early in the morning and it was hard to walk. I knew I better start the pain medication otherwise I'd be crying before I even arrived at the in-laws; or the outlaws, as we like to call ourselves.

I didn't want my daughter to be worried about me and seeing me wince in pain would definitely do that. I prayed that the medication would take effect and at least help me pull off my little charade of feeling just fine. Her dad and his wife were also going to be spending the day with us and I wanted it to be a day of joy, not one of worry. 

For so long I blamed my former husband for the events that led up to our divorce. I had a lot of anger that I kept buried deep inside. What I didn't realize is that the anger was there long before I even got married. I still don't know everything that is buried in there but he got damaged goods and neither one of us was aware of it. You can't fully love anyone else unless you love yourself first and that was my problem. I didn't know how to be open and vulnerable, well, I did but it wasn't going to happen. The added plus was that if he did see what was underneath all of that he wouldn't love what he saw. Having gone through all of that and very slowly came out of it, I wasn't sure how I felt about spending the day with them. All I did know was that my daughter wasn't going to pay for my insecurities and I was determined to smile, no matter what.

The conversation during dinner was so easy. The families were blending beautifully and I couldn't ask for anything better. Then my former husband asked me if I'd spoken with my aunt lately. 

Maybe it was all the carbs and the sugar but I had a moment of clarity. I'm not saying my ex-husband was an angel but my reactions to the issues and problems that we had were way over the top. He was surrounded by the women in my family who had their own problems in their marriages and, in this case, misery really loved company.  I have no idea if we would have worked everything out but it seemed that everyone from our pastor (and that is whole other story) to my family was actively sabotaging our marriage. The scary thing is, I allowed it, reveled in it and did my part to destroy it.

It took me a very long time to get away from the dysfunctional dynamic this side of my family possessed. It was a family that needed drama, intensity and high volume to survive. The women were strong and heaven help you if you got in their way. Well, they would just steamroller over you and that was that. I ended up with them because I had lost both of my parents and I moved in with them.  The trauma of losing both of my anchors so early in my life took a huge toll on me. I already had issues with abandonment and losing my parents cast those issues in stone. I took on the personality of my aunt as my own and even when I disagreed I couldn't open my mouth. I felt that if I did take an opposite stance I could lose another set of parents. I was locked up in a prison of my own making. 

When my aunts and cousins marriages were breaking up I was at ground zero in the middle of the perfect storm. As far as everyone was concerned, men were bad and then it turned out that my husband couldn't even breathe right. I was in an environment of malice and I couldn't stop it. I felt powerless and I went right along with all of it. It wasn't until they turned on me as well that I found out that I still had my own personal power; and, at that point, I used it. However, by the time I used it the cost was very high. I had been a loose cannon and everything was fair game. By the time the storm had stopped there was a lot of devastation in its path.

It's bittersweet to look back and think of the different paths that could have been chosen. There are ways to handle conflicts and I chose every wrong one. It took a long time for me to finally be at peace and I value that more than anything I possess. I can now look at him and, with all my heart,  thank him for the years we did have together and for our beautiful daughter. 

I can say how sorry I am, and mean it. 

I don't have to preface everything with, "if you hadn't......... then I wouldn't have....."  

I guess I've grown more than I realized.

Sunday, November 21, 2010


I don't mean to be Pollyanna.
There are many things to be thankful for.
For instance,
I can be glad I'm not a turkey.

I don't mean to be glib but there are times, many times, in the midst of chronic pain that it's hard to find something, anything, for which to be thankful. When you hurt, all you can think of is your pain. At this time of year when blessings are being numbered in our lives and the only thing you can find to be thankful for is that you're not a turkey: you're in a great deal of pain.

I went to a Fibromyalgia support group meeting last Thursday evening. I hadn't been to one in awhile and I've missed them. The reason I missed some of the meetings can be traced back to a lovely symptom called "the fog." In other words, I just forgot. Unless I have events input in my phone, I just don't remember them. I have to put everything, however inconsequential, in the calender otherwise I miss it. When I say inconsequential, I mean it. I have to remind myself to do even the most mundane of tasks. However, I digress. It was an interesting meeting and we talked and got to vent. Near the end of the meeting we were asked how Fibromyalgia has improved our lives.

Was this woman on drugs?

As we sat there stunned by the question, a light suddenly came on. In some way having a chronic illness has done something positive. For some, it was having much more compassion, for others it was finding more time to spend with the people they love, for the leader it was finding a sense of purpose and for me, I have begun blogging and through this medium, met some wonderful people.

As I think about it now, it is more than that for me. I have discovered a great deal about myself and tapped into a creative side that has been dormant for many years. I've said before that I'm not a real open individual. It has been difficult for me to open up, be vulnerable and communicate my feelings to others. Blogging has really been the start of an interesting journey for me. While I may not be able to articulate some of these things verbally, I have learned how to open up via the written word. I am so thankful for this and Fibromyalgia made this a reality for me.

It's amazing how God will close one door and another one will be opened to you. As I heard the diagnosis of Fibromyalgia I felt the world close in around me. It was almost suffocating. I was in control and self sufficient; now it was just the opposite. At that point in time I had no idea that just by writing a few simple words that I would soon be a blogging addict and that instead of having the feeling of the world closing in on me, I would feel a new found freedom.

It's not easy for me to have an attitude of gratitude. I don't mean to say that I'm ungrateful. Nothing could be further from the truth. That would be very rude and I'm just not that way. What I mean is that I'm naturally a cynic so being Pollyanna isn't easy for me. I have to dig down real, real deep to feel that way let alone feeling that way on a daily basis. The immediate is easy to be thankful for. It's the things that are less obvious that's hard. Does that make any sense?

I know that being positive keeps you less stressed. You live longer and enjoy better health, both mentally and physically. It also seems that optimists are more resilient and flexible. I must be both. I have a very cynical view of human nature, however, I do believe that everything will work out in the end. So what does that make me? An opti-pest?

So what am I thankful for? Mostly, I'm thankful for a loving God that has answered some of my prayers with no and yet gives me the things that I haven't asked for but yet knows that I need. I'm so thankful for my daughter and the rest of my family and friends. 

Everything else is just icing on the cake.

Mmmmm.....did I just say cake? 

Oh, wrong holiday.

This one has pie.


I can be very thankful!

Wednesday, November 17, 2010


"God has given you one face."
"And you give yourself another."
William Shakespeare

I hear a lot about "being real," about being "your authentic self."  Is it really possible? Maybe it is to a certain point but I'm not sure anyone can be truly real. In my own mind I just don't think its really possible.

I don't think it's realistic to think that anyone can get through this life without their psychological skin being burned at some point. For some, it's a scarring that means major therapy and for others it's the place we start the construction of walls. I don't think I've met anyone who doesn't have some point at which public knowledge ends and privacy begins. 

So what is meant by "being real?" How much of ourselves do we have to show the real world before we're considered fake? If we don't choose to show it all are we living a lie?

I went to my reunion a few weeks ago and after I left I felt like I was living that proverbial lie. I was smiling like everything in my life was fine but nothing could be farther from the truth. Every bone in my body hurt. The car accident and this subsequent illness has wreaked havoc in every way possible; physically, emotionally, spiritually, in my career and financially. Did I want to appear weak and out of control to my former classmates? Not only no, but hell no! So, am I not being real? Do we need to expose our vulnerabilities to be real? Is this I'm okay, you're okay stuff going too far?

Where does being real begin? 
What does it mean?

I know I have walls up. Only my closest friends get past most of them but there are still those that are ingrained so deeply no one will ever pass them.  I do know that one of the deepest has to do with abandonment. I'm equally as sure my adoption has a great deal to do with it. There are pieces to the puzzle of me that only I can fit to make the puzzle whole. I'm not sure I even want to put the puzzle together. What would be the benefit at this point?

So the face we put to the world is the self that we want others to see at face value, so to speak. The rest has to be earned. Chronic pain is the proverbial icing on the cake. Yes, it makes you introspective but it also brings the false face to the forefront. Invisible illness is just that. It is a false face that we present to the world so they don't see the physical pain that lies underneath the surface. Physical pain, emotional pain: pain is pain, no matter how you cut it. 

So what is "knowing our authentic self?" I think that most of us know who we are. We know what brings us pleasure and what brings pain. We might not know what we want to do with that knowledge but that has no bearing on the knowledge. We present to the world that which insulates our psyche. It's not a false self, it's a safe self. We've been conditioned to believe that if we don't bear all we're not being "real" and I don't think that is the case at all. 

I just don't think we have to tell all. 

I think there is such a thing as too much information.

Tuesday, November 16, 2010


I need doctors.
I need the medications they prescribe.
They still call what they do a "practice."
I wish they'd get it right.
I wish I didn't need them more.

When I'm asked a question, I give an answer. It's just the way I am. Good, bad or indifferent; you're going to get an answer. I didn't say you'd like it but, if asked, you will get my opinion.  Why do doctors ask you a question and then totally blow off your answers and/or your concerns? I don't wish illness on anyone but, for just one day, I wish they could feel what I feel. I'll bet they wouldn't be so dismissive then.

I really dislike spending one hundred dollars for ten minutes time. I fill out a little form about the pain levels and then I'm shown into a little room. A few minutes later I'm answering a couple of questions and then given my prescriptions. I'm shown out the door until next month.

Where are the doctors that treat the whole person? 

Where are the doctors that understand what pain does to the body and mind when pain occurs on a daily basis? 

I have to investigate other avenues myself. The use of aromatherapy, essential oils is something that is totally beyond them despite evidence to the contrary. I do need medications; I understand that, but why not use them in conjunction with other alternative forms of medicine. Why not use Guided Imagery, forms of yoga and Tai Chi and meditation? What about light therapy and water therapy?

Trust doesn't come easy to me and my distrust of the medical profession is almost equal to that of attorney's.

That is NOT a good thing.

It just doesn't make sense to me. Is it a time thing? They just want to cram us in like cattle. It seems like it is a whole lot easier to throw us some prescriptions rather than try to treat the whole person. They have no idea what they're prescribing and if there are any interactions with other medications or our diet.

Is it apathy?

For many of the people that suffer with an autoimmune disease or any disease that has chronic pain and fatigue as a marker, the day that an actual diagnosis is made, comes after years of disappointment and defeat. Most of us have had doctors who have made us feel like we're crazy or that our symptoms are just not that bad. Is it any wonder that there is a lack of trust in the medical community? Only a handful of doctors are even researching the causes of Fibromyalgia and Chronic Fatigue. I can only pray that one day a cure is found. It takes a lot of funds and even then it's tough. Fibromyalgia and Chronic Fatigue are  kind of "off the grid."

Until then.........
My opinion remains the same.

And it isn't real good.

But I need to keep my mouth shut because I need them.


Yes, I think I've got it.
Unfortunately, I think it's 
the XMRV retrovirus.

One of the best things about blogging is the interesting people that I get to meet. One man, "George" contacted me and every so often we trade information about Chronic Fatigue/ME and Fibromyalgia. He also has both illnesses but leaning more to the Chronic Fatigue side. I have both but lean more toward the Fibromyalgia side. He has been very helpful with his knowledge of medications and is very much into the research end of these illnesses. He has provided me with some wonderful links which I will add at the end of this post.

He asked me to announce some studies with people who have tested positive for the XMRV virus. I'm going to copy his email on to the blog so that I don't miss anything important by trying to summarize.

" In the mean time do you or any of your friends been tested positive for the XMRV retrovirus. The reason I am asking as a very prominent researcher is looking into XMRV and also MLV, MULV as causing Fibromyalgia and CFS as per NIH Alter, discoverer of Hepatitis B & C, and FDA Dr. Lo recent research study. The NIH is researching the cause of these illnesses by putting the world renown  expert, Dr. Ian Lipkin, known for rapidly discovering the agents of emerging infectious diseases in charge of finding out what's going on.

Another prominent researcher is looking for patients who tested positive for XMRV. He works at the world famous Fred Hutchinson Cancer Research Institute and the University of Washington in virology and molecular biology.

So maybe you can the get the word out via your blog to determine if anyone was tested for XMRV as he wants them in his research. I am a fund raiser for Fibromyalgia and CFS and I am also a member of a very large philanthropic foundation. I am trying to contact researchers who are willing to investigate this disease as well as obtaining funding through my foundation."

I'm also going to forward this information to Dominee Bush who has a fantastic newsletter for sufferers of chronic illness. If you haven't signed up for her newsletter, I encourage you to do so. It really is helpful. Funnily enough, I had no idea who she was when I signed up for her newsletter. I happened to stumble upon it and liked it, so I subscribed. Believe it or not, I went to high school with her! Amazing, isn't it? I will also include the link to her newsletter at the bottom of this post.

So if any of you have tested positive for XMRV, please let me know and I'll forward your information on to George. If you would like to use this post or link back to it from your blog, please feel free to do so, in fact, it would be very much appreciated.

I have a post, funnily enough, about my distrust of doctors and looking for people that might actually be interested in looking for a cure or one that wants to treat the whole person. Then, I got the email from George. Things always happen for a reason!!

So here are the links that George has provided and again, if any of you would like to get information from George on this research, please don't hesitate to contact me at 

Thursday, November 11, 2010


This is one of my favorite posts.
For many reasons and on many different levels.
It's been thirty years in the making.

I can honestly say that there is nothing else in this life that has brought me greater joy than my daughter Danielle. I said that the first time I felt her move and I can say it again today. There truly is no greater gift in this life than your children.

I remember being in the bathtub about three weeks before she was born. All of a sudden she dropped and I could breath deeply for the first time in months. I didn't care about any of that. All I could think about was that she was getting ready to come into the world. I started thinking about so many things. I prayed she'd be healthy and I prayed that I'd be a good mother. 

I had no idea how deeply I'd fall in love and it only took an instant.

I had a C-section and as they cut me open and brought her out into this world, she was looking around the room. She always did things her own way and it started from the moment she took her first breath. At three months she started to shove my hands away so she could hold her bottle herself. She was independent and wanted to do things her way.  Nothing much has changed. Danielle was definitely not the type of child to be reined in. The only thing I could do was draw a big circle and let her move freely within it. She could make any decisions within that circle but if she took one step out her little fanny was mine and we worked well together within that framework. When a lot of children and parents were at odds, Danielle and I drew even closer together.

We moved to a new house when she was four and we built a HUGE sand area in the back yard. She had her own little house out there but it wasn't quite enough. She wanted a microwave in there so she could make her own hot dogs in her own house. She ate pyracantha berries and ran when I tried to take them out of her mouth. She walked at 8 months and ran shortly thereafter. Nothing would ever be the same again.

When asked at school what we wanted to do in outer space she replied, "I want to ride a shooting star." There she is in one simple statement. She wrote about the red dress that I wore when I went out at night and canary diamonds. I then told the teachers that I wouldn't believe anything that Danielle said about them if they would do the same in return. She wrote a report on amphibians in the first grade and found a National Enquirer that said "Woman gives birth to frogs," and used that as her research. Her teacher called me and laughed like crazy while I was cringing. She gave her an A.

Danielle has her own code and way of looking at things. She is fiercely independent and loyal. Heaven help you if you come against anyone or anything she loves. She doesn't give many second chances. She also doesn't have many shades of gray; trust, loyalty and love are the words she lives by and expects the people in her life to live by them as well. Did I mention stubborn?

I've always been immensely proud of her and, again, nothing much has changed. I may not have agreed with all her decisions but they were hers to make and the lessons learned were hers also. She has always known that whatever decision she makes, good or bad, I'll be right there beside her. 

She's met the man who will be her life partner and its a good match. It's full of fire, passion and love. They share a wonderful trait; when they give their word it's gold. He lives by the same codes and values that she does.  I have no doubt that 50 or more years will go by and they will still be together looking back on a life full of joy and yes, challenges and wonder. They will treat their love as something profound and rare; something that shouldn't be wasted. I can't wait to give her away to this wonderful man. He's not my son-in-law, he's my son and I couldn't be happier about this match. 

So thirty years has gone by since the night that I gave birth to her. It was the most wonderful night of my life and it has been such a joy to watch her grow into the lovely, giving and gracious woman she's become. I can only hope that she will avoid the mistakes that I've made and I hope that she has as much joy and fun with her daughter as I've had with her. Danielle is my greatest accomplishment in this life. I couldn't love anything more. She will learn so many life lessons when she has her children but, most importantly, she will learn the lesson of true unconditional love. 

I've passed on the curse and I know it works.

I had a little girl just like me and I know she'll have one just like her. Over-reaction runs rampant on the female side and she'll have a whole lot of fun with her little girl. I really can't wait to see it. Her soon-to-be husband will have to sit back and shake his head. Me? I'll be laughing and reveling in the perks that grandchildren bring.

She's wonderful, strong and full of life.

 She is my daughter.

She is her own person.

She is beautiful, inside and out.

She is Danielle.

I love you more, my baby!

Happy 30th Birthday!

Monday, November 8, 2010


I learned something today.
Always ask what the cost will be,
BEFORE filling your prescription.

Hey, it's my fault. I freely admit that. All I did was answer a couple of questions. I went to my pain management doctor today and she asked how I was sleeping. I truthfully told her that I can fall asleep quickly but I don't stay asleep. I remain asleep for a couple of hours and then I wake up. I'll stay awake for 45 minutes to an hour and then fall asleep again for a couple of hours. This pattern continues throughout the night.

Chalk it up to the good old alpha wave intrusion.

Anyway, she talked to me about sleep aids. I have to tell you that I'm not crazy about them. All sorts of things go through my head. What if I wake up and don't realize that I've taken medication already and take more? What if I have a bad reaction? Can I take this with the medication I'm currently taking? She convinces me to try it because the lack of sleep isn't good for my body.

Really? The lack of sleep isn't good? Come on, I knew that already.

Okay, so I'm armed with the prescriptions and head off to Costco. I'm really not concerned because Costco is so much cheaper than anywhere else I've ever been. Prescriptions that cost over $60.00 at another pharmacy (which will remain nameless) was $18.00 at Costco. Probably why that nameless pharmacy has stores on almost every corner!!

I'm informed that the prescriptions will be ready in about 30 minutes so I decide to walk around and wait for them. 

Forty-five minutes later, after I wait in line, I find out they still aren't ready. Fortunately, the lady at the counter doesn't make me wait in the line again. She has me wait right beside the counter and about 15 minutes later she calls my name.

I hand her my card and she rings up the prescriptions.

$180.00 just for the sleep aid.

Let me tell you, I don't want to sleep that bad. Can you believe that one? Plus, I had a twenty dollar coupon that the doctor gave me. Stupid me, that should have tipped me off. They don't have a generic form of this particular sleep aid yet so I was stuck paying full price. Let me tell you, next month when I go to the pain management doctor she will be told that I'm not paying for that again. If it doesn't have a generic counterpart - forget it!

What are in these little darlings that cost $6.00 a pill, gold? No wonder the pharmaceutical companies and drugstores are such a lucrative business. Now, I don't have anything against anyone making a profit but that is unreal. This is just to help me sleep? What would it be for a drug that I really needed for something life threatening? How do people pay for medications? This is what gets me on my soapbox. This is the kind of reform that is needed. People should be able to get medication for diseases like cancer that doesn't cost an outrageous amount. My girlfriend had breast cancer and her bills for her prescriptions were almost (get this) $7,000.00 a month!  I mean, come on.......that is a travesty. 

Anyway, next time, I'll ask what it costs before I accept it.

I'm not paying 6 bucks just to go to sleep.

Next time, I'll buy Sominex.

Friday, November 5, 2010


Getting out of bed sucks.
But not for the reason you think.

I just can't seem to get it together. I have more pain than usual which is really saying something. I've tried adding ginger to my growing list of supplements because it is supposed to help with pain. So far, nothing has helped.

I'm getting frustrated.

What hurts the most is walking. I do try to power through it but it's tough to do. It truly does feel like I'm walking on broken glass. I don't know if it's a tendon problem or just a run-of-the-mill Fibromyalgia problem. I can't tell. Every five minutes it seems to be something else so pin-pointing the cause of these symptoms is a tough one.

I'm really trying to walk anyway but I have to add layers of insoles and gel to my tennis shoes and even then I have to wrap my heel with an ace bandage. That can't be normal, can it? Does anyone else have this kind of problem with their feet? Also, the humidity is rising so just add a lot of whole body pain to the pain in my feet. 

Geez, just add the tiara right now. 

How in the hell are you supposed to exercise when your body is crying out? I'm not a slacker. I'm still going to the gym and walking but I have to take pain medication to do even that. I come home and I'm wiped out. My feet hurt, my hands hurt, my body hurts. Everything hurts. Should I be walking on a foot that really hurts? Now that I've started to exercise I hate to stop, even for a day. What is the difference between tenacity and stupidity? Why can't I recognize the difference or have I already crossed the line from one to the other? 

If it sounds like I'm whining; I am.

I really wanted a positive post.

But I just can't dig down deep enough to find anything positive today.