Blue Moon: Eve of the New Year

On this, the eve of the new year I want to post something personal to summarize some of what I’ve learned in my past 39 years. Looking backward is not exactly protocol for this day of the year, but I feel I have a unique perspective and want to share. You see, most of you know that a Blue Moon is pretty special and having this moon of blue on the eve of a new year seems very poetic to me and it’s special powers are bringing out the joy that has been lying dormant in my soul for far too long.

As most of you know, I have the rare privileged of being born with a genetic kidney disease, along with the ability to remain as much in denial about it as humanly possible, until recently. This bodily defect and its effects on my mind and soul have given me many years of priceless lessons for me to carry over to the next life, but why waste such pearls on a new and foreign realm when I have a voice and platform right here, with the people who have known me and some who haven’t. It also helps that I so enjoy babbling on about things passionate in my heart.

About a week go I was having a really bad day when a friend called. He asked the problem and instead of keeping my big trap shut, I released the frustration by verbally throwing up on him about my bad day.  “I’m so tired of dying,” I said to him. LOL! His response was infuriating: “We’re all dying, sweety.” Again…LOL! I was shocked by the response, yet decided to suppress my gag reflex to explain why I had said that particular set of words (having to explain the pain of being a damaged and diseased person, who happens to not only be dying a very slow and excruciatingly painful death, but who also was losing hope and worst of all…joy) and instead just agreed with him.

After that exchange I began to ‘see’ signs from the Universe that some of my bad days are due to a lack of being able to tap in to things that bring me joy.  And from there, I have realized that of the lessons I’ve learned, most have to do with this elusive and impishly fickle emotion. Hence, my need to hurl these words to you in this post…

Gwen’s Top 10 Rules to Live by In the New Year!

1) Family (blood relation or chosen) is not expendable. Loyalty to anyone you consider family is a number 1 priority, no matter what. Being loyal brings joy. When you are asked to no longer be a part of a “family,” make your exit…even if you do it with flair, anger or  regret. Never stay where are not welcome. That takes your joy, and there’s more joy to be found elsewhere.

2) Stay on the side of your children, no matter how much you know. Children, even the semi-adult ones need someone they can trust, no matter what. Kiddos have a tendency to lie, cheat and some even steal, to push limits, test boundaries and the like. These things aren’t worth losing the trust of your child. Although children are family, they do not fall under rule #1 above. Never leave the life of your children, or allow them to leave you, ever, under any circumstances. I have the joy of knowing I have never left their side.

3) It is not worth my time or effort to work at a job that takes my joy. Everyone is replaceable, jobs are hard to find, the economy sucks and the energy zap of those things takes my joy. Work a job that you love even if it doesn’t financially live up to your expectations. The joy of it will far outweigh the cut in pay.

4) Everyone has a unique gift and talent, even if you don’t think so. Try everything. And when you find something you really feel passionate about…there’s your talent.  Use it in every way you can, every day. Live the joy of it.

5) If you lose something you thought was yours, you were wrong, weren’t you? Let it go, only after going through the grieving process which very well may mean screaming, crying, blaming, etc. Venting is (or can be) joyful when done properly. Don’t suppress your emotions…that can make you sicker, and you don’t need any more sick. Get it out so you can get back to joy.

6) Don’t waste one moment of precious time on people who DO NOT HONOR YOU! When you find someone (or they find you) that loves you more than you love yourself…this is unconditional love. And only unconditional love brings joy. Never, ever again suffer half-love or partial love or semi-love. You’ll know that you have unconditional love when the other person accepts you with ALL your damage, flaws and issues, AND sticks around for the adventure of what comes next…EVERY SINGLE DAY. I have the joy of knowing these people who love me unconditionally:

Mom – Your strength has always been an inspiration to many. I only hope to be as strong and positive and live up to your honor. You love unconditionally and always have – no matter the person. Thank you for the joy of you.
Johnny - What can I say. In the past couple of months I have seen a side of you I never knew…and that is my fault for not seeing it. You treat me as a real daughter with the care and love of a Dad. Thank you for that.
Ingrid - Rule #1 says it all with you my dear sister. We have had our moments, but they were just that…moments. You still accept me, even when you don’t really want to. Thank you for the joy of that.
Corey – My dear, sweet, son… You will know unconditional love because you were raised that way. You give that to me and you don’t even know it yet…someday you will. My joy is knowing that you take after me (and others who helped raise you) and will have the same passion and fire.
Reagan - My dear, sweet, oldest son… Your independence is maddening to me at times, yet I understand that you come by it honestly.  You take after your father. My joy is in knowing you will only have the good of your father mixed with the best of me and those who helped raise you.
Tony – You have always honored me and loved me unconditionally. We have spent years apart and yet I know to this very day, if I ever needed, you’d be there first. You always treated me like a lady, even if I didn’t deserve it…that brings me joy.
Darrell – Without you there would be no Jacob. I always considered you as my first love. Through the trials of our past, you still call me ‘friend.’ I am so proud that you have honored yourself enough to have the strength to make the changes in your own life for your beautiful family. You and Jacob bring joy to me.
Robin – You are a true friend. You have never judged me and always heard me speak from my heart. You accept me with all my flaws and never fail to surprise me with your own will to be a better Robin. That inspires me and brings me joy. You are the true example of beauty by which most others should try to attain.
Jeff – You make me laugh and that eases so much. Our friendship over the years has taken many forms, yet I feel that you have accepted me for who I am, unconditionally. Having you in my life, in whatever manner…is a joy.
Joey – We’ve not spoken in a while, yet I know when we do it will be as if we never missed a day. For as damaged as I am, you never made me feel that way. You are a unique and special man…don’t change…too much. Again, our history is a strange one, yet when I look back the joy of it is still there.
Darrell, Jeff and Joey - (I have to include this part for the three of you) When Corey and Reagan were babies and I was scared and on my own with them, the three of you used to sing them to sleep. This single memory brings me one of the greatest joys of my life. When I see the kiddos all grow’d up and trying to be men, I think of this memory. You guys will never know the impact you had on me and the boys. For a short time in history, we were a family of misfits who all tried to make the best of things. That is joy.
Suzie - Rules 1, 2, 5 & 6 apply here. You may not love me unconditionally, but I love you unconditionally.  I love you enough for the both of us and have a lifetime of memories to bring back the joy. And at the ‘end of the day’ you will find your own joy and return to ‘you.’ Knowing this brings me joy, even after the pain of losing a sister.
3 children I may never know – No regrets and only the joy of knowing the rules of the Universe trump all my rules.
Ron - You are perhaps one of the only people in this world who knows me and gets me. Without your unconditional love I would be a lesser person. You bring me joy every single day.

K, enough about that…there are several more I could list and I will make sure to get you the message. Back to the rules.

7) Don’t live in someone else’s box. If your world is governed by anyone other than yourself, you are in their box. My world over the past 3-something years has been governed by a man who didn’t love and honor me along with my Doctors. I had to come to terms with the fact that my Doc’s can’t cure me, therefore I must live by my code, not theirs. Hence, I am a kidney patient who smokes.  LOL! Silly, but I follow all the other “kidney disease” rules, I’m going to smoke. It brings me joy. And for the other…see rule #6.

8: Revise your ‘bucket list’ and keep checking off the things you accomplish. Accomplish as many of those things as possible, even if fear is involved. See, fear can be there, that’s ok. When you choose to accomplish a mission through the fear, uh shocker…the fear goes away. LOL! Gwen, you are dying a slow, painful death each and every day, don’t waste time on tasks that DON’T BRING YOU JOY!

9) As you lose the ability to do certain things, don’t see the limitations…find compromise and work-arounds to remain as active as possible.  In other words…if a door is slammed in your face, look for the window and smash it open. There is always a way when you have the will. And girrrrrll, do you have will. Always have…don’t lose it this year. Remember the joy that comes from overcoming. You have done things in your life that most wouldn’t dare…joy!

10) Accept yourself as damaged. Your body isn’t like the ‘normals’ out there who live with the mundane. You are uniquely and beautifully and gloriously…you. Your body will give out. You will have days, perhaps weeks and months of pain and weakness, this can’t be avoided and will certainly get worse as the years pass. Work around it and know that you always have options as in rule #9. Help others who are damaged to accept themselves for who they are, as well. This will bring you J-O-Y!

Have a Happy New Year and my wish for the coming is that you get all you ever wanted and wished for. The magic of this Blue Moon/Eve of the New Year will certainly prove joyous!

Dirty Little Secret: The Uninsured Sick

No pulling cards today or jumping on a soapbox about my deadbeat ex.  Today I’m angry at the system. Now, I don’t know much about politics and don’t care to get too far involved so as to further raise my already high blood pressure. Why do I have high blood pressure you ask?  I’m so glad you asked!  I have Polycystic Kidney Disease (PKD). Never heard of it? Neither had I until I was diagnosed almost 17 years go by the Baylor Nephrology Department in Dallas, TX.  And by that, I mean the ENTIRE team of Nephrologists at the Baylor Health System stood in an exam room trying to convince me (with x-rays, CAT scans and IVP results in hand) that I had this disease. I was in such shock and denial that I went home and decided that they were all wrong and had made a huge mistake. Kidney disease, are you serious? Get real…

At the age of 22 I passed my first kidney stone and that same year was told I had high blood pressure. I spent the better part of a year going through every possible test to find the source of the pressure in my blood when I was finally referred over to Baylor by my Primary Doc. Another battery of tests and viola! The source: swelling kidneys due to seedling cysts on both filtering organs. Doc’s said my kidney function was fine, the disease was genetic and there were no treatments or cures…just go home, take your blood pressure meds and live your life.

So I did. For 12 years, during which I passed another 6 stones, at least.

Then the bottom dropped out. One day out of nowhere, I began to have a feeling of dread, then pain in my lower abdomen, then doubled over and couldn’t get back up. I was taken to the Baylor Emergency room where I was told that a cluster of cysts had ruptured in my left kidney.  WHAT!  You never told me they could do that!  And further, you certainly left out the part where there would be excruciating pain! I was in the hospital for 7 days while on a morphine drip to ease the pain. No other treatments or meds or cures, just pain management. WHAT! There’s NOTHING else that can be done? Are you kidding me? You guys can cure cancer and you can’t make my kidneys stop doing this?

Anyway, back to my original issue. Here it is several years later and I now live in daily pain from a chronic illness that has no cure, no treatment and will cause my kidneys to fail within the next couple of years. Did I ask for this? Hell’s No. Are you serious?  Who would ask for this shit? I’m no beauty queen but for several years my dance card was full, people. I can’t be diseased!  LOL!

The much bigger issue is that I have recently lost my insurance. If you don’t know how this story goes I’m here to tell you:

After the deadbeat, bastard husband left, I was to move back home to TX to a small town with family to collect myself, which at that point had completely shattered. Did my disease go away during this process…of course not. So off I went to try to find a health clinic or hospital or Doctor who could see a chronic patient with no insurance.  Anyone care to take a guess at what I have found?

Not even the county health department could treat me. Why, you ask? I’ll tell you: the ONE Doc that the Gregg County  (where I live now…in HELL) Health Department  has, does not believe in pain management for the chronically ill.

I’ll say that again for the cheap seats in the back…THE ONE DOC IN THE GREGG COUNTY HEALTH DEPARTMENT DOES NOT BELIEVE IN PAIN MANAGEMENT FOR THE CHRONICALLY ILL.

You see, I haven’t the time or energy to go in to all the legalities of pain management, that’s another story altogether. But I will say this: nearly 5 years ago my good Doctors at Baylor and I noticed that I was having more frequent ruptures of cysts, the cysts were getting larger and larger and I was living in pain, every day. The natural course was to recommend me to their Pain Management Department. I went through another battery of tests, tried every alternative therapy, signed consent and release forms and was required to attend regular Psych evals to make sure I didn’t become a drug addict, due to the fact that the ONLY treatment that would work on intractable pain, was opiod therapy.  I’ll say it again: The only treatment for intractable pain is opiod therapy. ARE YOU KIDDING ME?

Intractable pain is more commonly known in the medical profession as “organic” pain, or pain that no other meds can get to. Tylenol, Advil, Motrin, Aleve and the like, don’t work on that kind of pain. The source of the pain is actually inside and around the organ itself. It’s not nerve pain like other illnesses. And, it’s not like headache, joint and muscle pain. It is ORGAN pain, typically from swelling of the organ due to growing cysts or infection from passing stones, or both. Either way it’s a lose/lose proposition with this disease. Most kidney disease patients need a transplant by the age of 40…I’m 39, and very fortunate that I still have kidney function. My father had it and died at the age of 42.

I spent nearly a year with the Baylor Pain Management System trying to get the meds and dosages right. They were understanding and worked with me very closely to help manage my pain so that I could live a normal life. After all, I worked full time, had kids to raise and did a lot of volunteer work. I couldn’t just miss a few days while my kidneys did their thing. I wanted to live. And live I did for the next 4 years. While I had insurance. I even spent a year in Jacksonville, FL with the Mayo Clinic, who also monitored my disease and pain management, again telling me there was nothing else they could do but ease the pain so’s I could live a more normal life.

Here’s where it gets really good. Now that I have no insurance, I am the uninsured sick. Our great country’s dirty little secret. All the hoopla going on about the health care bill this and the health care bill that, is really for the INSURED. Since losing my job and insurance and moving back to TX I have seen 5 Doc’s and they all say the same thing: We can see you for your disease, but we don’t treat pain. And, you will have to pay cash (anywhere from $150 to $300 per visit). And my regimen of meds costing anywhere from $500 to $800 per month makes visits to a Doc quite a joke. A very painful one.

I have been referred to 5 clinics who are supposed to help the uninsured. And they do, so long as you only need a shot or you have a cold. Maybe you have diabetes or a heart condition and need a refill on your heart pill. But if you need anything more than that you are SHIT OUT OF LUCK.  A nurse actually compared her diabetes to my kidney disease.  Lady, diabetes can be controlled…kidney disease can’t.  ARE YOU SERIOUS?

I became so frustrated that I actually asked one Doc if he could just remove the offending kidneys and replace them with good ones so I can go on living a semi-normal life. I figured if he couldn’t help me in any other way, that must be the solution.  He grinned and walked out of the room.

Now, I have some confidence that I will again have health insurance someday. I’m not one to sit around and die a slow and painful death by kidney disease. But I tell you this: I would pay DOUBLE my own health premiums if it meant that not another person has to go through what I have been through over the past month.

I had made a Myspace post several months ago about the legalities of pain management in this country. I’d love to rehash it here, but that’s for another time. I’ll leave you with this: If you were told you had an incurable disease that would cause you crippling pain on a daily basis, there was no cure for it, no treatment for it other than opioid pain management therapy…what would you do? What if it was your child? Your mother, father, sister or brother? What if it was your best friend?

Does any of this make a difference in how you view the political BS of the new health care bill going on in Washington?  It should…  Why? What would you do if you lost your job and health coverage for your family and someone became seriously ill or was already being treated for a serious illness? Where would you go?

Companies are still laying off, our economy isn’t bouncing back as fast as first thought and there are thousands and thousands of people in my same predicament. You could be next!

And, one last thought (my opinion): Our health care system is set up to keep people ill, not cure them. Go ahead and compare our system to other countries..even underdeveloped countries and third-world countries. They at least attempt to heal their sick and use preventative care on a scale that we may never see.

Diabetes? Get real… You awful, sonofabitch health care worker. You should be so lucky to only get kidney disease and lose your job and insurance, after the nasty karma coming your way, my dear!

The ire I have spread on this post and thrust at you also comes from the fact that I have a semi-friend who has a chronic pain illness. And she had to resort to street drugs when she lost her job and insurance BECAUSE of her disease. The doctor visits were too expensive and again, no one will treat chronic illness with pain management, on a sliding scale or at a discount, when there is no insurance.  This is a travesty. It is humiliating, degrading and can have dire consequences.

<Gwen jumping down from the soap box>