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

HAPPY BIRTHDAY DANIELLE

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!

DON'T ASK, DON'T TELL (OR FIND OUT)

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.

JUST CAN'T DIG DOWN DEEP ENOUGH

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.

Crap.