Burning...

Rage. Its climbed its way up the ranks of emotions to be one of the foremost things I feel lately. Boiling, churning, mad at the whole damned fricken universe. I want to smash things, throw things, just destroy things. Every time I see my boy laying in bed writhing in pain, I see red. I am so tired of watching him suffer! I want it to be over! I want him healed. I want the doctors we see to fu@#!#$ help him not be egotistical know nothing dickheads that write him off as depressed. Yes depressed. Hes 12 and hes already getting that shit. I want to rip the doctors face off. He has now poisoned the water to any other doctor who reads that report. That doctor had no idea what my son was like pre-misery. OF COURSE HES NOT GIGGLES AND LAUGHS YOU EGOTISTICAL PRICK,HES BEEN IN PAIN FOR A Flippen YEAR!!!!!!!!!!

It wasn't enough for my life to be ruined by illness. To watch everything I  had planned for the future ripped away. No that wasn't enough. I wasn't already barely able to manage handling that. It isn't enough for me to struggle agonizingly from one day to the next. No. Of course not. My son had to fall ill because, you know, I can totally handle it, no problem at all. Watching him suffer day after day, loose his life as he knew it, stop going to school, spending all day in his bed....yep easy peasy, no problem what so ever.

I swear to god I'm going to loose my mind, or have a heart attack. Tears and anger and sadness are boiling under the facade of normality that I wear at all times. Sobs just escape my throat before I can stop them, they are there so much of the time, bubbling up from my shattered heart. There are two tons of bricks sitting on my chest so I cant draw a breath. I'm living in a constant state of anxiety that if I don't keep under control leaves me a  crying, screaming, panicky mess. When I do control it, it still leaves me a panicky mess. Its something my body does well, over produces adrenaline so it takes any anxiety I have and runs away with it, leaving me a shaky, anxious bag of nerves laying in a fetal position trying to remember how to breathe. The times when it took over, snapping my mind and my control, I did scream and yell and clear counters violently, I was called a f'@#king baby. So now, on the outside I try not to show it. I push and push and push it down. I cry and rant and cry some more when I am alone. And that's what I am. Alone.

I even tried to pray again, because this is my son and I would walk through coals to help him. So I prayed to God to please, please, please heal my son. I told  Him I know you have reasons for not curing me, I stopped asking for that long ago, but now really my son???? Please God, please I beg you to heal him. A miraculous and total healing. Pretty please and Amen. Apparently His answer so far is the same one He gave me. If Hes even listening.

Watching your child suffer is excruciating. I am watching him slip away into that world of pain. He rarely smiles. He is a ghost of the child I knew before. I am worried he wont be able to handle it...I'm in constant fear that he will try to take himself out of it. I worry that nothing will help and this is his life now. I'm scared and sick that this is forming his personality for the rest of his life. I worry, I worry I worry. I cannot breathe.
And now I burn. I burn because there is nothing I can do. I burn because this is so unfair. I burn because I hate the world for doing this to us. I burn and smolder and cry. I wish for the end of the world. Because there is nothing else I can do.

I Know It's been awhile...

March 11, 2014
 Its been forever, I know. I have no idea why I'm coming back and don't know how long it will last. My life is literally imploding. I am imploding. I just cant get the strength to explain at this moment everything that is going on. If you are loyal, you have seen my Facebook posts full of anguish. Earlier I posted this note there.

 HELPLESS
 In a dream I'm sinking below the water...waves furiously tearing and tossing...shattering me...I fight for so so long with everything in me...until I just cant anymore...I am too battered, sick, weak and so soul achingly weary. I make a resigned peace in my soul to just surrender. The bubbles are so beautiful leaving my body...doing what I couldn't, floating to the surface, releasing my soul...but then my heart that was so peacefully resigned seizes in absolute overwhelming, paralyzing terror and disbelief...he is above me, the monstrous waves in all their fury are tossing him mercilessly, tearing at him, trying to greedily devour him. Our eyes meet. I see terror in those beautiful brown eyes, but even more heartbreaking, I also see sorrow, and scariest of all, acceptance. NOOOOOOOOOOOOOOOOOOOOOOO! NOOOOOOOOO! Oh God not him too. Not my precious son, so young, so much life ahead of him. I frantically start to try to get those bubbles back. I try to move my battered body up toward him, we reach for each other but are so far apart and those waves, those damn waves just wont stop their constant battering. Our hands touch, clasp but I feel him slipping away from me and I am helpless to stop it. Helpless and hopeless I watch him get further and further away and there is nothing I can do to save him. How can I ? I am already gone. I want to scream out to him how much I love him and tell him to keep fighting, I want to, but all my bubbles have left me and the waves rip the words from my mouth, filling me with salty water that should be coming out my eyes in tears. Maybe they are, I can't see anything anymore, its too dark where I am. I love you my precious son. Love you more then myself. Keep fighting, never give up.

My youngest son is sick. He is basically bed bound with severe migraines. He is not able to go to school. He is not able to do much of anything but suffer. We just got back from yet another waste of time appt at Primary Children's Hospital in Utah, where he was seen by a neurologist. Caleb is showing very definite signs of having my ugly congenital disorder. The one that led to my having Dysautonomia and POTS. It is Ehlers-Danlos syndrome. So once again I am being thrust into the very frustrating journey of trying to get help for diseases no doctor wants to admit they know nothing about. I had basically given this all up. I have some support from a wonderful doctor....in California. Its not the best situation having your doctor 1000 miles away, but you take what help you can get. But now it's my son. The hell I thought my life was? Like walking through a flower covered meadow compared to what I am now experiencing. This is hell. Watching your son slip into himself...becoming a mere husk of who he used to be...someone has clawed their way into my chest, pulled out my heart, ripped it to shreds, and shoved it back in. A question has been screaming in my head constantly. The gist of it is this... How do you rescue someone who is drowning when you yourself are drowning?? Have been drowning for so long you can barely keep your head above water anymore? I found this answer in the chaos that is my brain right now. When that person is your son, a piece of your soul that you cannot live without, you just keep trying. There is no such thing as tired, or weak. Or sick. You just keep pushing that child above your head,even when it means in doing so, you go under. Every.Time. You just push and push until your EDS arms dislocate and your going under so many times its hard to get a breath. And when you do emerge, you take a quick breath and use it to scream and scream and scream for help until you go under again. Emerge, take a breath and breathe in into your son if he needs it, then sink again. You do it for as long as it takes. You CANNOT stop. EVER. And you ignore that darkness that creeps closer and closer every time the water takes you under again. Kick it away with every kick to push your child afloat...just keep kicking it away even when you feel its cold icy fingers wrap around first one ankle, then both ankles, trying to claim you. There is no tired. There is no sickness. There is no stopping....ever. You are his only help in this sea of life. You are his Momma. You will keep on until death finally wins. And in that minute, as it pulls me to wherever I am going, I will have to let him go, praying that my screams were loud enough to get someones help, that the very breath from my lungs gave him strength, that all my kicking and pushing let him build up enough strength to start swimming, and screaming for help until someone comes and saves him. I will never give up. As long as I am alive I will be there for him. I will die trying to help him. Because I am his momma and he is part of my heart that is vital to me. My precious boy. I will always fight for you. I love you more then life itself. 

I dont want to do this anymore...

This week has been hard. My camera broke. I feel like ive lost a limb. Or a friend. Im mourning it. I know we cant afford to fix it right now. It has always felt like a guilty pleasure anyway, despite the fact that it is my one true passion. Now its dysfuctional. Broken. Like me. Something is wrong with it. I have no idea how to fix it. In this small town I have no idea where i can bring it to be diagnosed. And so it sits there. Useless. Not able to do what its supposed to do. Wow. Theres so much symbolism there, i cant begin to put it into words. Im supposed to start a new med tonight. I dont want to. Im scared. I have heard it works well for others but with my insane body, who knows. So many of the recommended meds for dysautonomia, effect me completely opposite of how they do for others. Its supposed to help with my constant migraines. But its a anti-seizure med and that scares me. My sister had to take antiseizure meds and they were awful. She actually stopped taking them so she could function again, risking seizures to do it. So i battle with myself again. Do I or dont I. I know i need to give it a chance. The meds for my stomach have helped somewhat, so i know i need to just try. But its so hard, this fear of a med making you feel even sicker. I am already so miserable, just thinking of putting something into my body that may make me feel worse is paralyzing. I cant take being any sicker in a day. I just cant. I told my hubby that really i just dont want to have to NEED another med. I dont want this disease. I dont want to riddle my body with drugs that may be effect other organs long term. I want to be that 80 year old lady that needs no meds. Im 38 years old and need a pill box. But i havent used one of those yet either because I DONT WANT TO HAVE TO NEED IT!!!! I dont want to do this anymore. I want to wake up tomorrow and have it all be a bad dream. I want to wake up feeling awesome. I want to not be sick and nauseated every single day. I want to have energy. I want to eat what i want. I want to work in my garden without blacking out. I want to wake up and not feel my heart racing away. I want to never have more then a little tension headache ever again. I want my life back. I dont want to do this thing called life with multiple noncurable, debilatiting diseases anymore. I just dont. Im sick and tired of it. So yes this week has been hard. Broken cameras, realizations that camping may just not be an option anymore, no matter how much i love it, new meds to add to the ever growing list.....its just been one of those times that the denial i try so hard to live in, just crumbles away. And that is terrible. Its like trying to wake up from a horrible dream, only to realize there will not be that feeling of relief upon waking, that the nightmare is your life. And sometimes i just dont want to do it anymore....

.

A loosing battle

So today I'm so very sick. I have been all weekend. I think I may have a sinus infection. My head is splitting. I'm shaky and so so nauseated. When I stand up I grey out and fight off spewing my guts. My heart rate is flying. All weekend I battled this but today its even worse. I have a child home sick. Another one due home in 15 minutes and a hubby whose working till 10:30 tonight. All weekend I was forced to be a nonexistent parent. Loaded up on a chemical arsenal, laying in bed. My kids were fine, they are old enough to be OK when I am bed bound. I know this in my head but how do I make myself stop feeling like the looser mom of the year? I hurt so bad today and feel so sick I need to take the meds. But I am doing battle with myself. What about homework, dinner, making sure the kids stay on school nite schedule? I just want to scream. I cant do it. I cant do it! The frustration is so intense. I hate this illness. I HATE DYSAUTONOMIA!

Im having a moment. I really hope it lasts longer then a moment, but in case I forget about it tomorrow, I will write it down. I dont even really know how to put it into words, so forgive me if I ramble a bit. Today has been hard. Full of pain. Full of suffering. I have no clue why this should come over me today of all days, but here it is. PEACE. A strange peace. An emotional crying my eyes out kinda of peace. A realization. Life is short. Scriptures float thru my head. About how this life here is but a vapor in the wind. Im realizing how true that is. Even though part of me is screaming the contrary, that my suffering is long. I am realizing that I am lucky. That although this body, this shell is breaking down, malfunctioning, frail, I am ALIVE! Every day is a gift being given to me. Another day to see my boys grow toward manhood. To see who they are becoming. Another day to serve the purpose God has for my life. I am alive and breathing and here on this earth to live out my purpose. Yes I am sick. Yes, every single day is a struggle. But im here and God has His hand on me. It will be ok. IT WILL. I think about all the regrets and sorrow I have. The life I feel I have been robbed of, the things I wanted to do. And I realize, its not about me. Its not about what I want. Its about His plan for me. I may never know or understand what it is in my time here. But I have to choose to just trust. To be thankful. To endure, and try to make the best of my time here. Because in the blink of an eye, it will be my time to go Home. Whether that is tomorrow or 50 years from now. Yes I will suffer. But I am not alone in that. I am not special. We all suffer. We all endure. But I know its not forever. Someday I will be renewed. On that day I dont want to look back at a life wasted in bitterness and regret. On a purpose lost on me, unfulfilled. I am here for a reason. I will try to live it without doubt, without anger. Be thankful. Maybe even MORE thankful BECAUSE I am sick. Thankful that my body has made it thru another day. I still yearn to go Home. For relief. But I am somehow in less of a rush. I want to live out my purpose here. I want the gift of another day in my boys lives. Another day with my husband. Another day with my friends. Another day to be the person God wants me to be here on earth. I hope this peace, this realization stays with me. I hope I dont wake tomorrow and let my pain, my illness, overwhelm me again. I say that and realize, that if not tomorrow, Im sure it will another day. Because it is the nature of this illness. It is overwhelming. It controls even my emotions some days. I am greatful to have this moment of clarity, of peace. I am writing it down, so when it overtakes me again, I can read this and remember. I can read it and hopefully find the peace again, and be thankful to be alive and breathing another day. To remember that I trust in His purpose for my life, and go on another day.

Peace to all of my friends who suffer. I am greatful you are here another day,
Cyndi

Cave Dwelling

I'm cave dwelling again. Down in that dark, dank pit. I'm sorry. I know some of you may be hoping this would be a happier post right? Sorry but in the brief moments of joy I experience, I don't waste them by sitting at the computer. Maybe someday, I will write about them also. Right now I have to get this darkness out. I know I'm not alone in my cave. Over the last few days I have heard from several of my fellow dysautonmia/Ehler Danlos Syndrome friends. They are feeling done. They want to give up. I sometimes struggle with what to tell them. Its hard to be encouraging when you are in the same exact place. The fight is exhausting. I was honest with a friend, and told her the thought of ending it is always there, a serpent thought, slithering through my mind relentlessly. It tells me how tired I am. How sick. How hard this is. How peaceful it would be. I could finally just REST. Sometimes it is soo soo tempting, but most of the time it is just torturous. I would never do that to my family. EVER. So it taunts me. I have never been in a cave so deep, so dark for so long until this illness hit me. I claw and scratch my way to the light every so often, look around with squinty eyes, sometimes even FEEL the light. Brief times of reprieve from the dark. But I always fall. Sometimes just a little, so I can still see the light, lots of times, all the way to the bottom. Its dark and lonely down here. Oh the thoughts that go through the mind in that pitch black place. Terrible things like, "why does God hate me, I am done with Him". Being jealous of cancer patients. Gasp! I know its awful. I know I'm not alone in feeling that, thank God. Why would you be jealous of them, you ask? A little part of my brain says its because they are either gonna get treatment and get better, or they will get to be released from the suffering. I know, it is horrible, I KNOW! And if i was told I had cancer tomorrow it could be a whole different story. Who knows. Do any of us who, at times feel so ready to give up, really want to DIE? I don't think so. We just want relief from the suffering. We want to LIVE. I feel I am not really living, just enduring,struggling, existing, suffering. The endlessness of it staggers me. I just cant fathom still doing this in 1 year, 5 years, 10 YEARS! The thought is so agonizing, the urge to opt out is there, always there. To exert some control over our powerlessness. Because there is no control of anything with this illness. I cant control my body, so I cant plan a life. I cant work, so I am powerless against the debt that is piling up from medical bills and the fall out of those bills. Debt from which, I cant ever see us emerging from. ENDLESS ENDLESS ENDLESS. Endless illness, endless stress,endless struggling. What kind of existence is this? I have become a master of deception. I told my husband I was depressed and he was actually shocked! I guess I'm doing a great job of hiding my cave from others. I have come to really hate the question, "so how are you doing?" Trust me people, you don't want the real answer. I know there are some who would say I need to be more positive. Please believe me when I say I have TRIED and TRIED to have a totally positive attitude. Sometimes, for a short while, I succeed. But then I find myself here again, battered and bruised, feeling like a failure, feeling less then those forever optimistic people with this illness. Feeling lonelier then ever. I also am left to wonder if my emotions are my own. Yet another uncontrollable part of this illness is its effects on the emotions. My body surges fight or flight chemicals randomly. So I can go from feeling calm to frantic in seconds. Let me tell you, I now understand the fight or flight effect. It is not just panic attacks. It is not just the flying high heart rate and shakiness. Oh no. The fight part of it has a definite sharp edge to it. I want to punch something. There is this ugly edginess, which sometimes is actually rage. I think my meds add to that. I have also been told by a doctor that chronic pain actually changes chemicals in the brain which leads to feeling depression. So I can finally get to the light, be soaking it in, enjoying life, and then BAM!!! My body THROWS me back into the cave. My mind is kicking and screaming against it to no avail. Powerless. So powerless.
I'm also floundering in my relationship with my Father. He is so far, far up there in my deep, deep cave. I cant reach Him, cant feel Him down here in the dark. I miss Him. I need Him. I don't feel His love or His peace. I know He is always there. So I feel,in yet another way, in my walk, I am failing. I am not weathering the storm with Him. I just cant seem to get to that place. I want so badly to be there. To be that person who radiates their faith through the storms of life. It kills me that I'm not that person, kills me. Holy Spirit, please help me!
I have considered seeking help. I am paralyzed by trying to start yet another search for a trustworthy counselor, preferably, a christian and one who knows how to treat people with chronic illnesses. Probably impossible in this place I live in. I'm also so reluctant to make more medical debt. I cant do it. The stress of it is overwhelming. So for now I will write it down, vent it out here. I'm sorry if you get tired of it. Maybe someday the cave wont be so deep. Maybe someday I will post about those moments I feel and see the light. Maybe. I really hope so...

Struggling

I know I haven't posted in a very long time. A lot has happened. I went to Alabama to a dysautonomia doc for testing and after 3 years I have finally been validated. Its official. I have Dysautonomia, POTS (postural orthostatic tachycardia syndrome) and one other thing I didn't know, apparently the last jerk cardiologist missed on their echo, Mitral Valve Prolapse. Throw all that in with the hypermobile joint syndrome (which is probably Ehler Danos Syndrome) and it all equals, a big giant mess. Of course I did not get to see the doctor I drove 3 hours, and took 2 planes each way to see. She left a half hour before I got to her to pick up a sick kid. I was given 3 meds plus the 2 I was prescribed by my jerk doc here in town before I left. So that makes a grand total of 6 meds. I am having trouble with the first one. Its making me have extreme feelings of anger, extreme irritability and even rage. I have not yet taken the other 2. The second is in a family of drugs I have taken before and I HATED the way it made me feel. Like a zombie. So I'm scared to take it. The 3rd is guess what? ANOTHER FRIGGIN BETA BLOCKER!!!!! Yet another doc did not take me seriously when I told her my side effects are horrific from every single one I have taken!!!! She said it was weird that I have those yet when I look up the side effects of the drugs, there they all are under the side effects, that you are to call the doc immediately if you have!!!!

I am so discouraged that I am beside myself. These are the meds that are supposed to help me...and I cant put them in my mouth...I just cant do it. Because when you are barely functioning with what you have and you know the drugs are going to make you worse, I just cant put them in my mouth. I CANT DO IT. And now I have to call the doc in Alabama and tell them to change every single one of the meds and they are gonna hate me. I keep wondering if it had been the right doc if she would have listened better. This one was rushed and somewhat patronizing. It was just my luck not to see her. I know she is better because Kayla (my friend that helped me out in bama who also sees Dr Moore) was asking if she went over this and that and did she talk to me about that? And I was like, no no no. She really didn't say much...and at the moment I was just so overwhelmed by her saying I have a classic case of dysautonomia, that a lot of stuff just slid over me. I did protest the beta blockers and for awhile she was talking calicum channel blockers, but somehow I ended back up on the betas. I don't know what to do. I know my body. I know how I will respond to these drugs. Do I refuse them and risk being labeled non compliant? Or take them and let them make me feel like death even more just to prove to them...if they would even believe me.

So I am overwhelmed. I have lost the hope that was on the horizon of the diagnosis. It just all went to crap. I knew it wouldn't be easy. But to be given 3 meds that I know feel like poison to me, is just my luck. I am lost. I don't want to do this anymore. I feel like I am not even capable of having coping mechanisms, because the disease and now the meds are stripping away the sane me and giving me this irritable, raging me that makes me hate the world and makes me yearn to punch something, anything to get relief from it.

So fun. And that's just the emotional side of it. The physical side has not changed. Migraines, dizziness, fatigue,nausea, flushing, burning and stabbing feet, the constant pain. (yeah I found out my right arm is so loose in the socket, it partially dislocates everytime I use it, and my jerk doc took the pain pills I could tolerate away, cuz he thinks they will react with the migraine med, even though the pharmicist researched it and said the risk is so tiny, he wouldnt worry about it. He gave me vicodin instead. So now Im on opiates and benzodiazepines, hello druggie zombie).

But I must stuff it all down. Pretend normalcy. Try not to bite my families heads off. The other nite I told hubby (who kept talking thru a show I was watching, making fun of it) that I couldn't hear the TV. When he asked if I wanted him to turn it up, I told him "no I want you to just shut up so I can hear it!!!!) What I really wanted to say was for him to just get the heck outta of the room. NICE. Thank you Klonopin. We barely see each other and now I'm a seething bucket of rage. Awesome.

My life goes by in a blur. I never even know what day it is. Its just a minute to minute struggle to function. I am spread thin by trying to practically single parent my 2 boys. Juggling their busy schedules and not forget anyone. Trying to deal with the financial stress of paying bills and ignoring collectors million calls because they want more money then i am able to send. trying to keep the house from being a giant stinking cesspool. Keeping up the car and buying a new battery after getting stranded in a dead car. You know, LIFE. But life spreads me so thin, that its just a smear of things for me. Always out of focus. I feel like I'm spread so thin, I am forever forgetting something, disappointing someone, letting someone down, messing up. But I have to do it. Put a smile on, for my boys, for the world. Act like I'm OK. Like I'm doing it. Handling it. Stuff it down, stuff it down. No time for crying,raging.

And now that word has spread that I got diagnosed, the "are you feeling better yet" questions have started. I hate to say "nope and now I feel like punching you for asking me because this new med is giving me rage issues" cuz that just wouldn't be very nice now would it? I think not.

I am also supposed to be starting the disability process. I cant seem to find the energy to do it. I have been given so little hope of getting it, i just cant seem to start a process that I know will likely take so much energy and yet again, like everything else, yield only frustration and failure.

I'M SO LOST. Please world just let me curl up in bed and forget about everything. I don't want to play life anymore.

Some of you may be wondering where my faith is in all this. It is there. I still believe. I just am having such a hard time connecting to my Father. I feel my prayers bounce off the ceiling. I know its me. He is always there waiting for me, but something in my heart is keeping me from Him. Anger? Bitterness? Maybe. I try to read the Word but cant make this fuzzy brain focus. My heart aches from it, this loss of connection, but try as I might, i just cant find it. SO again I am adrift...lost.

All of this turmoil is going on inside,but if you see me out, I will smile and chat and try to appear normal. And I look so good you know! If they could just open a little door to my soul, what would come out would knock them to the floor, or have them running away screaming, because it really, really doesn't look good on the inside. Not even a little.

So to those that are wondering how I'm coping with my diagnosis, there it is. I'm not. At all. It sucks. My hubby was a wee bit confused when I called him sobbing from the hotel room after I got the diagnosis. He said "well you knew that's what you had". Ya, I know. But to hear it out loud, once the initial joy and relief of being validated fades, reality sets in. Maybe I was wishing they would miraculously find it to be something else, something easily curable. One little pill would fix me right up. But no, I have a crappy, complicated, incurable illness. No I'm not gonna die tomorrow from it, but I will feel like I'm dying a little everyday. The suffering will just go on and on and on and on forever. Yay. A friend of mine was diagnosed with breast cancer a few months ago. They caught it early, thank God, and she chose radiation. I saw her a few days ago and asked how she was doing. She told me today was her last treatment. That's is. She is done. Cured. Now I know, I know...it can come back and all that. I know. But there was a part of me that was jealous. She was done. She can recover now from the side effects of the radiation. She will feel better now. I was overjoyed for her, yet jealous. Jealous of someone diagnosed with breast cancer. Awesome. Makes me feel so wonderful about myself. I have been told by other dysautonomics they totally have felt that so I guess I'm not alone in my awesomeness.

So that's it in all its ugliness. This is who I am right now. But aren't I looking so good?