TIME CAN HEAL ALL WOUNDS

It's funny how things change.

Life, Ideas and Beliefs.
You.
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.

ATTITUDE OF GRATITUDE

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.

See?

I can be very thankful!

GOT TO BE REAL

"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.

IT DON'T COME EASY

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.

BY GEORGE, I THINK I'VE GOT IT

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 roselee3@cox.net. 

CFIDS Association of America

CFS Central

Retroviral Activity in CFIDS

ME Society of America

Fibromyalgia Newsletters