Thinking Out Loud

So here I am, upright and alert at 1 am. The upright part is a constant struggle, but the alert part, happens a lot. I told myself I was taking a hiatus from blogging, and I certainly have kept true to that. The problem is, the mind didn’t stop writing. For me, I find myself composing a million entries in my mind, but not having the willpower to physically bother to just type it out. It’s like that is one step too much a lot of the time the past few months. So I lay there and think about things. Religion, politics, the state of my health, family drama, sometimes zombies after watching too much of The Walking Dead. I craft it all out in my head, what I would say, IF I was writing. Telling myself that the therapeutic value of writing is something that I have found helpful in the past, but still, not actually getting up and doing anything about it. So, still in the fashion of not making promises to myself I don’t know if I’ll keep, I sit once more trying to jumpstart the disconnect between my brain and putting it down on paper (or blog as the case may be)

I have been though a lot since I was doing this as a regular thing. My health has been a roller coaster of coming to terms with the way things are and trying to manage life as things get thrown at me. I spent three months recently not eating enough to sustain energy to function, because Gastroparesis decided to take over my body on top of the Rhuematoid Arthritis becoming increasingly hard to manage. Spending days on end fearing and steering away from food, having my joints uncontrollably ache to the point of needing extra assistance walking and surviving in general just sum up a pretty miserable winter by most counts. We have been adjusting to Ken working nights, sleeping days and not quite knowing where I fit into all that. Digging out of financial issues, trying to retain a tether to friendships I haven’t been able to keep up with, and going into a pretty deep depression have dominated all in the past few months. At one point, I just wanted to curl up in the most remote corner of my house, with a blanket and just not think anymore. The freedom of stretching out in bed seemed even too overwhelming some nights. I went off pretty much all my medications and am currently struggling to get back into a regimen that keeps me as functional as possible. I had plenty to be thankful for, yet bringing myself out of the pit was something I just could not seem to undertake. Sometimes its hard to think about the reality that it probably WON’T be the last time I go through this sort of thing. That I just have to keep moving on and letting myself take the time to rest and reorient as needed. Lather, rinse, repeat.

At the moment, we are dealing with the logistics of having our car damaged in a car accident, dealing with insurance and the waiting game of getting our car back. Ken is on his way out the door for two weeks military assignment in Hawaii, which doesn’t include me, and I’m jealous about that. He better look sufficiently sad in every picture he takes, the nerve. I have to mentally and physically prepare to drive up to DC for a few days, mostly to help out my grandmother with some stuff, maybe feel good enough to enjoy a few things while I am there. It certainly helps that the rental SUV we have at the moment, I thoroughly enjoy and I might have to give it back with great sadness when all things car are completed.

In other news I have been craving eggs on my burgers lately, and its kinda been non stop on that end…I want one right now actually. Which reminds me, our oven is broke and I need to call that in.

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Up Shit’s Creek Without A Paddle.

My cat has conjunctivitis.

I feel like leaving this post just at that sentence alone, because that’s just the overall tone of my week. Everyone is laying around sick trying to give what they have to the next person (or cat). The lethargy in this house is epic. Ken and I have been sprawled out in bean bag chairs in the basement, pretty much just drooling, looking at the TV and willing there to be a magic fairy that would bring us food. And that fairy must know what we want, because we sure as hell didn’t.

I was shown the way into some totally free college courses by major universities this week as well and I’m pretty excited about the prospect, but to be honest, I don’t know how much I can handle at this present moment. I have registered for two classes, and I’m checking out two archived ones, but the commitment terrifies me even though its totally self paced. I haven’t been able to sign on but one night this week and only for like 30 min because of all the sick going around. But I want to share this resource for anyone interested in learning just to continue learning. Some of the programs will give you legit completion certificates at the end, and they will grade you and take your assignments serious as a college course should be taken for an extra small fee. edX.org is the website.

Also I have taken up some stress relieving meditative art. I’m getting into zentangle, which is kinda like creative pattern doodling, where you just make patterns and go with it, creating this wonderful masterpiece as you go. Mine are still on the new and crude side, but the really good ones are truly beautiful works of art.

I really need some stress relief in my life because financial relief isn’t coming soon enough. Ken has been going on interviews and there is good interest shown, but the hiring process potentially takes so long we are drowning in the meantime and have been turned down for every state assistance I have been able to apply for. Losing round 1 of my SSDI case was really a huge blow even though it was a long shot to begin with and I STILL have to appeal that. I don’t know if I have the strength to move on and do it, I’m just broke down right now really. The last thing I want is a legal battle. Just like the last thing I want is an eviction. And both of those are on the table it seems, when you are disabled and no one has any income coming in or help to offer. Things were supposed to get better. College degrees open doors right?

I feel like such a failure at life.

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My First Zentangle

How Did I Get Here Anyway?

So let’s flash back about 10 years and I’ll brief my story to you.

One day, in 2003 I woke up with back pain. It was bad. It went on for days and I could feel it everywhere. Finally, I caved and had my boyfriend take me into the ER because i just KNEW something must be broken. I was only 23 years old, it had to be something I did right? Xrays revealed nothing, no abnormalities. I was sent home. Little did I know that pain was never going to go away.

Over the next few months I kept ending up in urgent care centers, ER’s and doctors offices in excruciating pain that had grown from my back to my neck, down my spine and all over. Everything hurt. I didn’t want to be touched. My hands were swelling, my joints ached, I was nauseous all the time. Also, I was tired. So tired. I was told everything was fine each time, given some muscle relaxers, some pain meds, and sent home. Nothing helped. One doc sent me to a Rheumatologist, and an Endocrinologist who both declared me healthy and discharged me from their practices. No one wanted to send me to a Pain Specialist. After two years of begging docs to believe me, despite their preliminary test results, I lost my health insurance and had to give up.

2005: Those two years were about status quo. Pain, swelling, super fatigue. I developed acid reflux. Lots of random headaches. My hormones flipped out of control, so I never knew whether I was getting a period or not. I battled depression and anxiety big time (I also didn’t know at the time I was bi polar, which now explains some of my mood issues) and every job I tried to work I ultimately had to leave because my pain and exhaustion was too great to meet the demands of working.  I was working as a CNA/GNA and had plans to become and RN.But I could barely walk or stand, let alone lift and turn patients.

2007: Finally I landed a job at The Pentagon with good benefits and supposedly mostly behind a desk. But instead I ended up running around the clinic a lot putting out patient crisis fires. I loved the job but I could rarely take time off to deal with my own health. A few doc trips for pain meds were all I could afford to do for the next year or so, and besides, my fatigue seemed to be on the back burner for once. I took an even better paying job eventually at Walter Reed, and things looked a lot brighter until I noticed the pain and fatigue and anxiety getting worse again. It was affecting my ability to function. People were noticing. In a strange turn of events however, Ken proposed, and we had a whirlwind courthouse wedding and before I knew it I had transferred my job to Ft Bragg, NC to be with him.

2009: But it only got worse. We had a deployment coming up, my stress was out of control. My pain was out of control, along with all the other symptoms. In order to keep me upright at my desk all day, I was being given lidocaine shots in my back to numb me so I could finish out the work day. 16 shots in my back, just so I could sit in a chair. That’s when we made the final decision that I could no longer work. Ken deployed, I moved to Houston to be near a friend during the deployment.

In Houston, I started seeing a doc for the pain and that’s the first time Fibromyalgia had been mentioned to me. Now I was familiar with it. You don’t stay sick this long, without hitting the internet for some answers. No one ever wanted to talk to me about it however so I gave up trying to bring it up a LONG time ago. I was relieved and heartbroken at the same time. Everyone knows Fibromyalgia is a life long sentence of pain with no cure. And it comes with a lot of co existing problems. Like fatigue, other autoimmune disorders, gastrointestinal issues, memory problems, sleep issues (oh god the sleep issues!) just to name a few. A few months into my stay in Houston I was hospitalized for a kidney infection. Half the time I couldn’t remember what I had done 5 min prior without a prompt or 10 min to think about it. I was always losing stuff.

I came back to Bragg in the Spring of 2010 to wait for Ken to come home in October. With one diagnosis in hand I started with a new doc, and this time was granted access to a neuro and a pain specialist. I really thought I was going to get help! The neuro did not believe me, even though he slammed me on an insane dose of Lyrica to shut me up I guess, (it did not work, the Lyrica nor the shutting up) and the pain specialist bounced me out because they only deal with pain from injuries, not disorders. I then insisted that my doc run some autoimmune labs on me and sure enough my ANA came back positive! FINALLY PROOF RIGHT? WRONG. The Rheumatologist I saw there said it was “weak” and she doesn’t deal with fibromyalgia anyway. No help anywhere. Just pain and tears. ended up losing my gall bladder in december of that year due to acute onset of gall bladder disease, and had the worst recovery the docs had seen in a long time pain wise. They kept me in the hospital a week before discharging me.

2011: Finally we had put Ft Bragg in our rear view mirror and moved to Richmond, VA. Fresh start, all new doctors. My new doc, immediately set me up with a Neurologist, who has controlled my vestibular migraines (chronic migraines that come with vertigo), a Gastroenterologist, who found out that not only do I have reflux but I have gastroparesis (fun fun), and the best Rheumatologist ever, who not only positively diagnosed the Fibromyalgia properly, but has uncovered another thing everyone else ignored: I have Rheumatoid Arthritis. The joint pain, and swelling were NOT my imagination. And my “weak” ANA was screaming something was wrong after all.

2014:  We are working on all my problems to manage them, but they are all chronic illnesses that will never be fully cured or side effect free. Diets, treatments, physical therapy, medications, it’s all been trial and error. Some have made my pain worse, some have made my functionality better.  I will still never function like a normal person, and I will continue to have health complications arise from them for the rest of my life.

One Box a Day

Do you know how hard it is to limit yourself to one box a day? But right now, it’s about all that I can handle. I’m so exhausted from the move on Saturday that my days look a little like this:

5:15 am wake up, fight some vertigo, stare at the ceiling and think about how much my hips hurt, my shoulders ache, and the fact that I don’t know if I have the strength to roll over today…… go pee, take pills, ┬ámake coffee (all hail mighty Kuerig!)

6:15 drive Ken to work. In my pajamas. Who needs getting dressed this early?

7:15 Arrive home and fall down to rest, fight some vertigo until about 9:30-10:30, because  driving exhausts me that much

10:30 try to unpack one box until the task gets too overwhelming and I end up on the floor sweating, in pain and almost in tears.

11:30 Stop to eat, take more pills, start preparing dinner, or maybe run an errand or two. Try not to die from pain, exhaustion or a combo of both. With a bit of anxiety thrown in, just for fun you know.

1:30-3:30 pm – it’s time to lay down and fight some vertigo whether I like it or not. Set alarms so I don’t sleep right though getting Ken from work.

4:00 Call my grandmother, who without her and Ken, I don’t know how I would pull through the day sometimes. I get my pep talks through them, or I just vent my frustrations of being sick, fatigued, in pain, you name it. I need the outlet sometimes.

4:30 aaaaannnnnnddddd…….I’m off again, to pick Ken up from the VA Hospital, for his shift is over. I try not to zone out and just focus behind the wheel, but admittedly it’s hard at this point. I’m very foggy, and as much as I love driving, I don’t trust myself a lot in the car anymore. It depresses me that I have lost joy and gained fear in something else in my life. I always end up letting Ken drive home, because I’ve used up all my reserves just to get there safely to pick him up.

5:30 Hopefully, if I’m on top of things, I’ve planned dinners for the week already and taken steps to pre prepare them with Ken’s help on Sunday or at least the night before because if not, starting from scratch, I’m screwed. We end up eating like crap. And I have spent all day fighting nausea anyway so it’s hard to find an appetite.

6:30 Resting, working online on a project, helping Ken unpack a box, running an errand, take your pick because I could be doing any of these things. With a little fatigue and vertigo thrown in.

8:00 Finally, I’m in bed. But i can’t take my pills yet, it’s too early. I’ll wake up like its morning at 1 am if I do. Must stay awake until 9. Finally at 9 I take my pills, and pass out.

Wake up at 10. Wake up at 12. Wake up at 3. Wake up at 4:30. Give up sleeping, and start thinking about the day over my coffee from the almighty Keurig again.

One box at a time. It’s all I can handle right now. I just want to be normal.

 

(Wo)Man In the Mirror

I have a confession. On this lovely blog here, I have been pretty open about some things. In my other social media sites though, not so much. I have a really bad habit of molding myself into this compliant person that doesn’t want to lose friends or family in the internets simply because I have opinions or thoughts of my own. Yet I sit here every single day and be accosted by the opinions of everyone else I chose to be online connected with, without a word most of the time. It feels unfair. So let’s set the record straight shall we?

I’m a bleeding heart liberal. I believe in gay marriage (gasp) and that the LBGTQ community deserves EVERYTHING everyone else is entitled to. It is NOT a lifestyle choice, and it’s not against nature to love whoever you chose to love. And no, it’s not going to divulge into pedophilia or bestiality. These are ridiculous arguments, for neither party can give consent, quit being dumb and bringing them up. Also, the Christian church does not hold the patent on marriage, people were getting married 1000’s of years before Christianity was even a twinkle of an idea.

I believe in this country helping the downtrodden and those in need, and everyone lending a helping hand for those who are willing to try to rise out of their own situations and make themselves a better life. I believe there are men and women that serve this country under good intentions, and while their orders my not always be what we agree with its our responsibility to recognize they are not to blame for doing a job none of us will willing to sign up for. I want better healthcare for our nation. I’m sick of the disabled being cast aside, and the less fortunate being buried under medical bills no normal person could afford. I’m tired of having my uterus legislated. If Obamacare is what we have right now to ease some of that, I intend to give it a chance.

And now religion. I’m an atheist. For those who need a clear definition of that, it means I reject the idea that a god of any sort exists. It’s not a religion, there is no dogma and I’m not some scary person that eats babies in my spare time. I recognize evolution as fact and I rely on science and logic and reason to expand the knowledge I have, not a book that cannot be proven to be real, but ultimately taken on faith alone. I do not feel like organized religion is very healthy, nor do I agree with it’s practice as a whole. I understand that this is my opinion, and there it is, and I’m always willing to talk, but never there to “preach” or “convert.”

These are things I don’t discuss a lot except with a few close friends. But that is about change. If I support these things, I should walk the walk after all shouldn’t I?

From the Favorite Granddaughter, with Love.

Recently we lost a very dear member of our family, my grandfather. It’s hard because he is the first grandparent I have lost while I have been alive (my other grandfather died before I was born) so a part of me has no idea what to say about it.

I know he’s been sick and struggling for a long time. Now, I’m a very rational person, and my first thoughts are, I just want his pain and suffering to be eased. It might emotionally hurt us, but we have to accept what is meant to be for him. I think of my grandmother and aunts and uncles and how they are going to cope and I’m upset for them. My father has tried very hard to be there through this whole ordeal and its been hard on him. My grandfather was a good man, a kind man, and deserving of everyone coming together to show him the love and time he needed when he needed it the most. I’m only sorry I do not live close enough to have the means to be of more of a help myself.

I have thought about death and what it means to me. Because of my position of not having a belief in a god, I also do not believe in an afterlife. I am ok with that. I do believe we all participate in the cycle of life, that we originated from stardust like everything else on our speck of a planet in this vast universe, and we function here within each other’s lives for the time we have. And afterwords we go on to continue to feed the cycle of life, and that’s beautiful. We leave behind our accomplishments, our memories with our loved ones and a legacy through our families that is never really forgotten. My grandfather had his own faith which he was very strong in, and perhaps he is right, what’s after death is certainly something no one knows for sure. Anyway I look at it however, a man with that much love to give deserves nothing but the most beautiful it has to offer.

So, here’s to the man who used to call me “boy” when I was 4 just to hear me squeal “BUT I’M A GIRL GRANDPA!”

Here’s to the man that I used to fight my cousin over trying to determine who was his favorite granddaughter.

Here’s to the man that always had PB&J and, barrel drinks and slices of American cheese in the house for me.

Here’s to the man that was always there, watching the family chaos, but genuinely happy to sit back and embrace it all. He never forgot a grandchild’s name, which is amazing considering there are 19 of us, and for me, knowing my grandpa was at a gathering, somehow made it complete.

And here’s to the man that brought a huge family together and made us all better people for it.

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Even the GREAT grandchildren found him to be something to smile about.

Driving Ms Eileen. Crazy.

I had the greatest snippet with my ultra conservative Fox News loving, Ann Coulter reading, Sarah Palin worshipping Great Aunt the other day. Sometimes I forget what music I have on XM in the car……

Car ( playing ” Back That Ass up” )

Eileen: “OH MY GOD. WHAT IS THIS?”

Me: (snickering) “Sorry about that, forgot to change the channel.”

Eileen: “WELL. That’s certainly not very CHRISTIAN music now is it.?”

Me: “I never claimed to be a Christian. I’m an Atheist.”

Eileen sucked in her breath SO hard I thought it was going to suck the car and all of us right into a black hole. Meanwhile my grandmother erupted in laughter in the backseat and later told me it was the funniest thing she had heard anyone say to Eileen in a LONG time.

Speaking of my godlessness, my dad specifically wrote in his card to me that he hopes God will step up and show me that “I Am Here” so that I believe once again. Uhhhh. I appreciated the rest of the sentiment, why did he have to go and throw that awkwardness in there? Religious fundamentalists just cannot help themselves can they??

Brought by the Letter M.

Sooooo, a murder victim was found behind my house a couple of days ago. Like directly behind my house they dumped the body. Thankfully I don’t go into my backyard area much or my therapist would have a whole new set of issues to deal with.

As the story officially goes now, a guy killed his girlfriend in a fight and then tried to dump the body behind my house. And someone came across it. When the police went the the woman’s apartment her baby was still inside. And they arrested the guy. I appreciate how everyone in our neighborhood was also notified of the situation via letter in our doors, like when you get a Chinese menu in your door. Only this one was like “FYI, there was a murder today….”

I would also care to mention that this happened when I arrived home from my appointment with psych where I was told officially I had General Anxiety Disorder, PTSD, and Bi Polar disorder. It was a LOVELY day. But there we have it folks. The official reports are in on what I have been going through the past few years that have exploded the past few months. I took the weekend off to process the information, even though I’m not surprised and I was prepared for what much of the personality assessment had to say. It’s just so, sobering, to see yourself, what makes you tick on the paper. The good, the bad and the ugly, and agree with it because you do know its true. There were things I was proud of on that paper, traits I wouldn’t give up, but also things on there I would trade in a heartbeat not to have to ever feel again. If only letting go were just that easy now that I know about it. If just seeing it could cure me and free me of this mess. It’s just not like that.

So instead, I’ll be meeting with a doctor to work out a plan to stabilize my moods and control my anxiety, and I’ll work on learning how to cope and process information in a healthier way with my therapist. I think the next question down the road is, will knowing all this be a opportunity at a last attempt at communication with my parents, or will it be the last break for me before I have to say enough for my own health and really move on in a more drastic measure?

Inkblots and Imaginary Friends.

Lately I have hit this level of exhaustion that has rendered me just too exhausted to write. It’s not that things haven’t been going on, because man have they ever, but just living through them have been enough at the moment. Writing about them, that’s just had to wait. Until the Klonopin wore off and I had my mind back that is. Klonopin is one of those great drugs that calms you down but also kind of renders your brain useless to cognitive thought, so writing is damn near impossible.

Did you know that psychologists still use those inkblot tests for things? I had NO IDEA either until confronted with my very own set last week. Now THAT was fun. Apparently I just see the inside of the human anatomy in everything, and I think she was surprised at my graphic detail on that. And I saw the bat signal on one. But really there was a point where I looked at her and exclaimed “COME ON! A two year old just splattered paint on that,” and refused to “see” anything else. Apparently that wasn’t an acceptable answer and finally I told her “fine, it’s a body.” From the best of my Internet research when I got home, while my answers aren’t standard, I got the conceptual idea of the inkblot cards right, and it safe to say I’m not schizophrenic. That was on the table?! Schizophrenia?! (One little breakdown and they think you might be full blown schizophrenic, that I will never understand. I was never climbing the walls, talking to imaginary people, threatening to hurt ANYBODY or the like.) I’m going to be skeptical of the whole inkblot method though anyway, it’s too much guesswork and not enough proven accuracy for me. Luckily the rest of my visit was more in depth and focused on better diagnostic methods concerning my issues.

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I’m convinced this one is Optimus Prime.

The summary of our week beyond that consisted of some high stakes finances. It’s like poker, only with our utilities, cable, and rent up as collateral, and we are playing with groceries. Ken’s car unexpectedly died and won a all expenses paid trip courtesy of our checking account to our house from the middle of the road. Now we have one car for the rest of the month. So there’s that to be excited about. Negotiations for obtaining my medication for my Rheumatoid Arthitis are tense and frustrating as its being held hostage somewhere between my doctor’s office and the mail order pharmacy. No one really knows, they both say someone else is fucking up. I’d also like to throw in here, that no one seems to give two flying fucks what i have to say about it because they have pushed this process through every step of the way despite my concerns, and every step of the way it’s ended up a problem for ME. Either way, I’m in terrible pain and no one is sending in back up. Stay tuned. It’s a developing situation.

On Illness and the Faithless

I’m pretty sure the number one question people with chronic illness get posed to them is “How to you cope?” This question spans the positions and beliefs of all of us, the spiritual and non spiritual. I happen to hold the position of being a Humanist/Atheist and I lack an acceptance of a higher power in my life.

However, we all go through the stages of grief in our illnesses in the process of acceptance of our day to day lives, and I’m no different. I still struggle, get angry, depressed, search for answers, handle my life and seek comfort. But these things may come from different sources, or surprisingly even from some of the same places. I do not pray, but I rather rely on the lessons I have discovered though my own perseverance that I can make it through the next day with the support of those around me, and inner strength to wake up each morning and face the day. I have so much here to live for, and I find that in my friends, and my family which are beautiful and here right now even if sometimes I have a bad day, or I think my illness is just never going to end. It’s motivation to make the most of the life I have before me.

Becoming ill, and with multiple illness was devastating for me. I of course had moments of irrationality in my thinking, I imagine we all do in desperation, whether its to seek God or abandon God. Day to day life can be tedious when the hits just keep coming. However, little things start to happen, that ease the blows, or you have a good cry, and you get some clarity. A good friend picks you up. You notice your pets have not abandoned you while you have been falling all over the place, or even if you’re like me you just start laughing at your misfortune because its just too funny not to. Every time I land in the hospital, my husband holds my hand and we laugh the whole time I’m on the morphine drip and make terrible jokes. Even when he has to hose me down in the hospital bathroom.

I draw the same beauty from the earth that natural law has created and I have observed, and the deeds of humans helping humans have shown me that there is good out there. I do not need a deity to show me that path, for as I was raised a Christian, it did not fulfill me in the way embarking on self exploration has in seeking out the answers and being comfortable with saying “I do not know yet, but that’s ok” has been able to. For me, it’s opened MORE doors of opportunity, not to have all the answers than to leave some sort of finality up to a divinity I cannot prove exists and who just arbitrarily hands out burdens just to “see what we will do with them.”

Not having God encourages me to live my life to its potential now, despite my illness, to find joy, love and happiness. To be kind and fair not to judge those around me. It sounds rather familiar doesn’t it? I’m not eternally bitter, nor am I without direction for my lack of faith. I’m good with this being my only existence and the hand that I’m ultimately dealt, if this means that I get to make my existence count with the beautiful people I have crossed paths with so far. There is no RIGHT way to be an Atheist, please to not misunderstand that, we are not a religion, we have no dogma, no organization and we are not all the same. We are associated by a definition in a dictionary only.

However when it comes to dealing with chronic illness, pain, emotions we all tend to turn to the same places to find comfort. That inner place in our hearts where we find support, our friends, family, the world around us in its beauty. People helping people just get through every day inspire me to get through mine all the time. That’s how I know I can get through today as well.

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