Tuesday, September 29, 2015

Tug of War...

I know the agony of defeat. I am waving the white flag in surrender.  I give up.  I give in. Life has brought me down to my knees and I can't find the strength to get up. At times I don't even know if I want to.  My feet will no longer hold me steady, my body is broken and I am afraid after so much suffering, so is my spirit.  

Every day I fight from the moment I wake up till my eyes get too heavy and I find my desperate relief in sleep.  I try and smile to hide the tears that are just a moment away from falling.  I can't hold them back, they fall freely down my cheeks, and with them, the frustrations, the sadness, and the hopelessness I feel all too often.  I rage against the bonds holding me back, knowing no matter how hard I try, I cannot remove them.   They are invisible but that doesn't make them any less powerful, debilitating or restrictive.

I look in the mirror and a stranger stares back at me.  I don't know who she is and I have the uncontrollable urge to just close my eyes against the image I see. Her eyes are no longer bright and shining. They are dull and lifeless reflecting the hopelessness she feels. The double chin and shape of her face show the weight gain that is just another casualty that Dysautonomia has layed upon her. Shaking my head, I repeat to myself "This is not me!" all the while knowing in my heart that it is.  You'd think after years of medicine and their side effects, bedrest, and inability to excercise, I would be used to it by now, but no, it still is just as heartbreaking to see.  It's not as shallow as just my appearance though.  It's the knowledge that all the things I used to enjoy are gone to me now.  That is the hardest part.  Not the endless pain, hospitals, tests, medications or dumb doctors that think it's all in your head. (But OMGosh, they are the very worst)

It's the monumental loss.  Loving sports and being a total tomboy, I was in my element roughing it up with my 3 boys. (two kids and a hubby) Now I watch sports on TV.  I used to love shopping with my mom, but now it's online or not at all because  I can't walk through a store without getting winded and dizzy. I loved to sing, in the shower, in a choir, didn't matter where and when. I had a beautiful voice yet now it's raspy and cracks. Now I listen to music.  Enjoyable, but just not the same.  Dancing...(sigh) probably one of the things I miss most.  We had a girls night at a local bar and would listen to an awesome band and dance the night away.  The closest I get to dancing today is watching "Dancing With The Starts."   In the midst of this, I find myself with no insurance but it sure isn't for lack of trying. It is a nightmare and I will save that for a different post. I used to have an image of me as the "cool" mom.  A place where my boys friends could all hang out.  Playing video games, basketball, pool, whatever they wanted. We lost our truck and house when my husband's work went bankrupt and the company screwed us over bigtime.  Didn't pay insurance premiums even though we paid for them so all these bills were left to us. Paychecks that we never received. We are so far in debt in medical bills that just keep building up day after day.

Family, an amazing support system was the one life line we had left and they stepped up in too many ways to help and support us. It should be the other way around though, we should be helping and supporting them.

I try so hard to deal with the reality that is my life but it feels impossible.  The future looks bleak, my dreams of retiring in a Blue Ridge Mountain cabin relaxing on rocking chairs, looking over the mountains, drift further away with every passing second. The present nearly unbearable and the past, just a memory that makes me long for the old days, the old me.  I've always said that I won't let this beat me, but it is.  It is slowly taking more and more out of me. A game of tug of war. I am grabbing the rope with everything I have left, and the flag is being pulled away from me. My hands are burning, slipping, I am losing my grip, losing this tug-of-war.....

Dysautonomia 1
Jenn                0

Thursday, September 17, 2015

Post Debate Analysis...

1)  CNN wanted ratings and pitted candidates against each other.  It didn't work for Fox and didn't work here either. This country is so screwed up at this point that I want answers and details.

2) Trump is nothing but a sideshow at this point.  He is a entertainer, not a leader.  When you can't manage to get through one day without insulting someones looks or abilities, how are you going to deal with fragile diplomatic negotiations. Yes, we know you "Are rich" and "Will make America great again."   I would like to know how.  Details.  Trump is as clueless as Obama was and makes the same empty promises.  If you want more of Obama, then by all means pick Trump.  Do I even need to mention 4 bankruptcies?  It is not the Donald Trump show and the sooner the media and "fans" start realizing that the better.

3) Carly rocked it! Enough said.

4) Scott Walker, who I still really like, had no time to do much, if anything.  He needs to start getting passionate or he will be the next dropping out.

5) Christie and Rubio stepped it up and I expect their ratings to go up.

6) Jeb was a little more energetic this time but he is just not Conservative enough for me.

7) Carson was just kind of blah. I like what he has to say but he needs some pep in his step.

8) I like Huck, he just doesn't have the support he needs.

9) Paul and Kasich just ugh, don't do it for me.

10) Cruz is my guy.  He is passionate and knowledgeable and not afraid to speak his mind. I would love to see him as our next president!!!!

Tuesday, September 15, 2015

Response to a Meme...

Someone posted this about me in a tweet, and I want to take this meme apart point by point.  I can only speak for myself, not all Christians.

1) I do not oppose gay rights at all, but I do not agree with changing the meaning of the word "marriage" to support a gay agenda.  Civil unions should be used by the government for everyone with all rights included.  Islamic Militants throw gays off the roof.  Note the difference.

2) I have no problem with them teaching evolution as a theory as well as all the different alternatives, such as creation as well.  Islamic Militants?  Their kids learn how to kill infidels and practice beheading them.  Note the difference.

3) Simply, I like the Constitution.  I like state rights and don't believe the federal govt should be legislating over education, health care, etc.  The IM want to rule by Sharia law, so yeah, this is also false.

4) Ah yes abortion.  I am realistic and know that Roe vs. Wade will not be overturned but I believe that the disgusting and horrifying act of murder should be held to strict standards. Absolutely no partial birth abortions.  Do IM oppose abortions, idk but if they do, then that is probably their one and only redeeming property.  That statement is 1/2 true but I will let you slide on that one.

5) Global Climate Change... Seriously? This is how you compare Christians to IM?  Stretching a little bit there...well actually a lot, but I will bite.  This is a subject that has a lot of the country divided and at all different levels.  I listen to both sides of the argument and make my own educated opinion.  As for the IM, I think they could care less about Global warming.  They are too busy trying to find martyrs that will blow themselves up for the "cause."  If you want more information, as an IM yourself.

6)  Where do we oppose equal rights for women?  I am not even going to argue this one because it is so obviously, patently wrong.  As  for IM, yes, their attitudes on women are horrible and disgusting!  There is no comparison on this one at all.  Moving on...

7) This statement is true.  I do believe our religion should be taught in school, just as Judaism, Hinduism, Buddhism, Islam should be too.  It's a part of our history, present and future.  Again I wonder do their kids even go to school.  Next time you see an IM, ask him about their child's education.  The answer will probably be very interesting although you probably wouldn't be alive long enough to tell anyone.

8) This is my favorite by far.  They hate Obama.  Ding, Ding, Ding, you win a prize.  Yes, I most definitely hate Obama.  I hate what he has done to this country.  I hate what he has done to my family.  I am chronically ill and cannot get insurance. I am not getting the tests and treatments I desperately need. I don't qualify for medicaid because I qualify for medicare (which you have to pay for and only pays 80%.)  My husband has been busting his butt trying to find a job that pays more than the $11.00 he is currently making part time.  He cannot not find a job and let me tell you it's not from lack of trying or experience.  Within the last 5 years, my husband's place of work went bankrupt.  That was our downfall.  I got very ill and had/have no insurance.  We lost our house, our truck and were basically homeless with two teen boys.  We were blessed to have such great family around us that have gotten us through.  So yeah, Obama, Obama care and his disastrous presidency has ruined us.  His foreign affairs has been horrible, funding our enemies and alienating our allies.  Our country is in the worst shape that I have ever seen and I felt that was Obama's plan all along.  So yeah, hate is a very good word to describe somebody that has ruined my children's futures and have made our life what it is today.  The black thing? Couldn't give a rats ass what race he is, he is the worst president in history.  

Sorry to bust your bubble, but this meme is nothing but a joke and if that is the best you got, don't bother me.

Sunday, September 06, 2015

A Feeling I know all too well...

I didn't write this but speaks for so many of us that struggle with chronic illness.

An open letter to healthy people from a former healthy person.

Dear healthy people,
Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic autoimmune disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

I am watching myself transform from a healthy, young, active, invincible woman to a sick, grumpy, defeated, disabled, immobile, needy person. I know what it’s like on both sides now – I’m on top of the fence. I’m at a tipping point and I know which way I’m tipping. What goes up must come down. My fence has a greener side, definitely, but the other side of the fence is perpetually somewhere I’ve already been and can never return. My fence is a prison wall and I have multiple life sentences. I’m not getting out of this alive. It’s all downhill from here, you better believe it. Happy birthday, here’s another pain pill. Ready for narcotics yet? What about steroids? How’s your infusion this month? Oops, those side effects really took about a week of functioning from you, let’s try a new drug before that last one leaves your system and hope for the best.  We’re playing the medication dart board: bull’s eye on that last drug cocktail!
I can see it now, I’m becoming that grumpy old woman with resting bitch face to hide the hideous pain. I’m becoming that woman everyone feels sorry for and others don’t know how to approach because she might explode.
How terrifying to become something we’re all afraid of.
I emit solid grunts and gasps of masked pain and now it’s happening startlingly unbeknownst to me in public spaces. It’s like a fart you don’t realize you let out in a crowded elevator. Who DID that horrendous thing? I’m sharing my vulnerability without choice, with people who do not know me, whose only duty is to hold or withhold judgment of this masked-pain crusader. I am a warrior in my own mirror, but society is not a mirror. In my own space I occupy, I am a saint, I am a god, I am constantly overcoming or succumbing. But to the crowds, the masses, the hoi polloi, I am a poor wretched soul who needs to suck it up and shut it up. People have cancer, for crying out loud, you don’t matter as much. Big brother is watching and you don’t look sick and you’re too young for disability, why don’t you leave that for the people who really deserve it. Suck it up and go find a job (you’ll be dead in ten years).    (Here’s a picture showing how I feel about that)

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography©2015

Many of us you see who are broken, you know us only in our current brokenness. But remember, many of us once were full of life, full of vigor and energy. Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional soccer players, chefs, teachers, doctors, parents, ballerinas…
Remember when you see us that we once were like you, healthy and full. Remember that we still remember what we’ve lost. Remember we still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.
We love. We dream. We hope. We fight. We need. We survive. We succeed and fail. We live. Love us.
We hide the pain because it’s stigmatized, but also because we want to hide from ourselves. These bodies, our bodies, get so heavy we just want them gone. We want to get away from our own prison walls that we did not choose. Our sentences are binding, prophetic, and soul-wrenching. We often wonder what crime we could have committed in our mother’s womb to invite lifelong pain and degeneration. Fairness is a big deal and we battle the meaning of fair with every breath. Why us?
Our tears bathe silent pillows when the world is sleeping. Our cries go unheard when we try to recount them in the cold, sterile, institutional exam rooms we visit too frequently. Home is a white paper covered cot with pokes and prods and needles to track the progression of our losses. Home is where the heart is – broken and beating frantically in our throats during the MRI results. Our second shifts (if we can work at all) are the lunch hours and after-hours we spend on hold with pharmacies, doctors, insurance companies, or waiting in long lines for urgent care or a new prescription that will take full weeks of our lives away from complicated and frightfully severe side effects.  Our vulnerabilities lie dormant until we stand, embarrassed and demoralized, in a crowded room to beg for some quiet because our head is spinning; or when we place ourselves in front of a congregation of people and ask someone to please drive us home right now because we’re sick, so sick.
We, the people, fight in elections for our own versions of political and social progress while we, the chronically ill, stage losing fights in our sleep for disease regression and a return to our traditional bodies. We want an end to this gut-wrenching, spine-aching, head-spinning, disabling gift of our precious sickbodies. The concept of “mind over matter” muddles with the unpredictable, calculated precision of autoimmune inflammation causing kyphosis and iritis and spasms and 28-years-old-turning-74-next-month. We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, our hearts. We have been blessed with the curse of  witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will.
We are not strong, we are not admirable, we are not role models because we woke up and chose to be.  We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior.  What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight.

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

Be with us. Remain with us. We were once leaders, friends, professionals. We did not change, our bodies did. We are leaders, friends, professionals. We are sickbodies, and we’re here until we’re gone.
Love us.

Wednesday, May 13, 2015

Sick and Tired of being Sick and Tired...

It's been a while since I've posted but things have been kinda  chaotic to say the least.  I've pasted on my last smile and I've cried my last tears.  Feelings of hope and faith have been destroyed and I am not sure if I can even bring them back.  Every day you wake up and all you want to do is go right back to sleep.  It literally hurts just getting out of bed.  I can't look on the "bright side"' anymore because it has just been dark for so long and I no longer have the strength.  This world has kicked us around for a long time, but I can't get back up.

Nothing seems to go right anymore.  We owe so much money to everyone, doctors and hospital bills are insurmountable.  Every week it is another test and study, this week my family doctor and then later on in the night is my apnea study  Johnny has been working his ass off every weekend for crap and he is hurting constantly.  We just can't catch a break for anything.  I've been faithful so far knowing God has a plan for us but each day gets harder.  I see people going on vacations and wish I could do that for my kids.  My son started driving and along came the extra money for insurance which he has been contributing to.  Then this usually dependable car, starts falling apart.  Par for the course but ENOUGH ALREADY!  We have insurance that basically bankrupts us each month.  Screw you obama and your obamacare.  It's crap and if I hear one more person defend it I will go off.  We are so far in debt it isn't easy funny but there was nothing we could do.  Johnny's last job screwed us over bigtime going out of business without paying what we were owed.  Just another example of our "luck."  No matter where he applies, he just can't find another job.  Can something please go right.  Anything?  I am just so tired of climbing.

Now to figure out what is more important.... pneumonia? Getting surgery for gastro issues?  Muscles weakening which means more testing.  Peripheal Neuropathy in my feet?
I have nothing left inside me and I don't know where to turn.