Cognitive Skills Severely Impaired

Damn it I just want to sleep. I would give my right arm right now for REAL uninterrupted, healthy sleep.

I have had sleep issues for about as long as I can remember now. Between unrestful and odd sleeping patterns, to straight up insomnia I dread nights. I also hope every night that this is he night that will be different. It never is. I’m always tossing and turning, aware of every ache and pain in my body, never in a comfortable position to relax, and waking up on average every hour on the dot. Green Day’s Insomnia plays in my head pretty much constantly. My brain doesn’t work right, I can’t carry a conversation half the time and I have not driven my car in over three weeks because I’m just not fit to.

Yes I’ve tried Advil pm, melatonin, tea, klonopin, Ativan, ALL my night meds have drowsy side effects, and had a sleep study done. No sleep apnea, but I do have restless leg syndrome. Basically I’ve been told to keep trying things I’m already doing, let my body sleep when it’s ready and adjust to its schedule. Right now I get my best sleep between 7 and noon. Pretty fucking convenient right? And double that with the Chronic fatigue and I have been living one huge party life lately of feeling pretty much like death. So for all those I’ve been neglecting, I’m so sorry. I’m just trying to get it together here.

My darling husband on the other hand, will sleep anywhere:

20140604-003615-2175919.jpg

Image

Adventures in the ER

Image

Got to love trips to the ER right? Three hours to get a bed. And I have duck dynasty for roommates where one of them injured their dick and is letting their IV beep uncontrollably. I wish I could make that up. He seriously walked into the ER waiting room, holding his junk, blood running down his leg with his wife and friend and was all “ya’ll need to be fixin’ this up!” When they put me in the bed next to him 3 hours later Ken and I had to try to hold back our laughter at the absurdity of it all, because the guy kept making dick jokes from behind the curtain that divided us.

BUT, the reason I was there. I have had this pain in my left flank for 3 days that was growing. Hoping it was just muscular, I was just trying to ride it out. When I couldn’t roll over in the bed without wanting to scream though, that’s when I decided I needed at the very least, drug intervention. I was worried it was my kidneys again and I didn’t want to take chances with that. I hadn’t slept much in days over this. So off to St. Mary’s we went, where we waited 3 ridiculous hours in wretched pain in the ER while totally ambulatory got beds before I did, even after I checked in. I understand the concept of triage ALL too well. I’m no stranger to hospitals or even working in healthcare where you make those types of decisions, but from what I observed, this was bullshit. Nothing I could do to change that though, you’re at their mercy while you are there.

Turns out, after one UA, a CT, and a ton of blood work (which i have yet to see the actual results of, but never fear, crazy healthcare lady WILL get that) It was all muscular and there was a lot of inflammation in the muscle tissue surrounding…..my kidney area. So i wasn’t far off identifying WHERE the pain was at least. Big sigh of relief that it wasn’t my kidney at all though. Muscular inflammation I can wait out and work with. So with a nice dose of torodol and dilaudid to get me started, I was sent home with some pain killers and anti inflammatories to get that process started. I’m trying to lightly stretch it out at home, and do all the usual muscle pull types of things and following up with my doc because I was supposed to see her two months ago anyway. I’ve just been too fatigued to do so.

I hope that guy gets home with his dick intact. That catheter bag is going to go down awesome at the hunting club I bet.

The Ups and The Downs

So according to Social Security, they concede that I’m disabled enough to have limitations in the line of work i have been doing for the past number of years. However instead of granting me disability, they have proposed I just “get another job.” Have I mentioned that through the years I have downgraded the intensity of every single job I have had from physically lifting and moving patients around to doing nothing but sitting behind a desk, answering and checking patients in for appointments? I CANNOT GET ANYMORE PHYSICALLY LESS TAXING HERE! And when I was forced to quit my final job they were shooting me in the back with SIXTEEN INJECTIONS of lidocaine to numb me up to keep me upright in my chair so I could finish the work day. SO TELL ME SOCIAL SECURITY, WHAT JOB SUITS ME? CONSTRUCTION PERHAPS? Will that put my HS Diploma and lapsed CNA/GNA licence to good use, because that’s all the skills I have. I’m a medical worker, I know my fucking limitations thanks.

Ok, enough of that. I also just reread the last email that former friend wrote me with her ultimatums gave me, for the first time in a week. I haven’t responded to it still. It still invokes the same stomach churning upsetness it first did where I am at a loss for words at how I could possibly reply without being snarky or incredibly awful in my response, or just cry my whole way through it. I just am not at a place where I can respond at all I do not think at the moment.

Especially not in the wake of one of my best friends since I was teen getting engaged this weekend to another friend I have known of ours since I was 18! I wish them both the very very best, I cannot wait to see them start this part of their lives together, they both deserve nothing but the best. I love Christine so much, I sat in my car and almost cried when I heard the news I was so emotional about it, and I’m not even the damn person getting engaged. She is. But then again, you’d have to understand the past 15 years to get why I feel entitled to be oddly emotional for her. I could probably write a book dedicated to the shenanigans of our friendship in this really bizarre Sex in the City meets My So Called Life sort of way. I couldn’t ask for a better person to make those memories with either. I miss living around the corner from each other all the time now that we are adults and have to live adult lives now.

For reals though, Christine, if I don’t hear some Jump Around at this wedding, our friendship is going under a serious probationary evaluation. 

Image

Struggling to the Top, Again.

To be perfectly honest, I’m tired and I want pierogies. Or sushi. But since I don’t have a car today, sushi is out of the question and I have a feeling Ken might be all sushi’d out. It’s all I want lately. So shortly I will attempt to stand long enough for some pierogies which will most likely evolve into pizza rolls, and I will then hit the bed like I have been doing manual labor all day. The truth is however, I haven’t been doing much manual labor all day. I caught up with a great friend today…. I MISS YOU KURT IRBY!!!!…..I cleaned the kitchen up a bit, and I have been exhausted the rest of the day.

We found out yesterday that I was denied round 1 of SSDI approval. While this was actually expected, my psyche is actually taking it as a blow. Those fuckers have NO IDEA what I deal with everyday, how I struggle to physically and mentally remain here on this earth and try to find a purpose in my life. How I DO NOT want to ask for help, yet I know I’m in no position at this point to make it on my own anymore.To someone on the street I may look like a normal human, but I assure you every step I take is calculated, every activity planned. Everything revolves around having the proper rest and pain under control to carry on. My goals aspire to be the girl who can support others like me from home, while taking care of myself, to let them know they are not alone, there are people out there willing to connect with them. But it cant happen if this stress in my life over where my next meal is coming from continues to be a problem. I need a little support myself so I can give back to those who need support as well. Is our system so broken that this can never be a possibility for me? I hope not. In the meantime, I need a lawyer and advocate to get me through these appeals so I can continue to fight this fight until I can bring some relief to myself and to Ken who is my steadfast supporter no matter what we face, or the outcome. I need to live up to this for him, and myself at this point.

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,  make 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.

 

Aside

Are We There Yet?

It’s been awhile eh? (i’m feeling Canadian in honor of my friend Laurie today.)

Move 2014 has been successfully executed. This is mine and Ken’s 8th move since we have been married in all of 5 short years. Between Army duties, deployments, moving, school, health issues and regular marital stuff, our marriage is really really exhausting. I feel like its been an uphill battle the entire 5 years, and I’m with a partner who loves me and who grins the whole way. This move was no different. He put up with my neuroses of starting to pack 6 weeks ahead of time. Though color coding and labeling all the boxes. He helped me purge the extra items for a 15 box donation to Purple Heart. On move day our pep talks went a little like this:

Him: “Deep breaths, we will make it. We are already there!”

Me: “Please don’t punch my dad when he says/does something infuriating.”

Outcome? I didn’t die, and he didn’t punch my dad.

Of course over all the people that came to help were pretty extraordinary to move all our shit that fast and pretty cheerfully at that. I am thankful. After everyone left Ken and I still made another couple truck runs for last min stuff and to clean the house, before we were able to fall down and do nothing last night and survey the disaster that is the new house.

My hips ache. I can barely keep my eyes open and the nausea is pretty constant, and the fibro fog is getting the better of me, but other than that, I came out in one piece. This is going to be a pretty short blog because I am passing out at the computer as I’m typing. I just don’t have it in me to bust out some Pulitzer Prize stuff right now.

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.

20140127-044951.jpg
Even the GREAT grandchildren found him to be something to smile about.

Fingers Crossed For Progress.

You know what’s cool? The Enbrel seems to be working! I’m in so much less pain, I’ve cut way back on the pain meds and my morning stamina is even up. I still have bouts of burning hands and feet, but this start is nothing short of amazing in my opinion so far. I’m still kinda on edge about being constantly immunocompromised and therefore easily able to get sick but so far so good.

My sleep cycles however are a totally different story. Since recovering from the accidental over saturation of sedatives on my liver, I’ve been able to recover from that but it’s brought back all my sleep issues. Namely, my body thinks it’s time to get up for the day at 3am no matter what, and my fatigue tends to get really bad after about noon. I’m going to be doing a sleep study soon to see if we can get some clarification on that because my sleep has been wildly out of control for one reason or another for over 10 years now.

I was also molded and folded and stuffed and fitted for a new bra this weekend for the upcoming bout of Army formal fun. My boobs hurt just thinking about that experience but there is an upside to this. Due to my recent weight loss of 60 lbs my dress has to be taken IN now! Sadly though, my boobs did not shrink. It was like hauling sandbags into a hammock. But I will be pretty damn it! Along with my hot husband in his brand spanking new service uniform, we will look good for once this year!

And with that, coffee #3 is calling….

Fibromyalgia is a Bitch.

Lately I’ve been experiencing a major fibromyalgia crash, which is why I’m not blogging as much. This time it’s coming in the form of a crippling fatigue and exhaustion that’s making staying alive difficult, so things like writing have taken a back burner. Don’t get me wrong, I’m using the tiny bit of energy I have to cook a meal and love it, or get done the essentials of the day, but ANYTHING beyond that is out of the question. I can only drive my car when absolutely needed because I’m afraid of passing out behind the wheel. So I’m struggling right now, but my spirits are actually pretty good about it, my crazy meds, and my RA meds seem to be working a bit. Also, I just became one of those sad pill organizer people because the Fibro fog is so bad I keep forgetting and/or double taking my morning pills and it’s gotten out of control….sigh.

On the exciting news, to me anyway, we got a Keurig machine and it’s my new best friend. A friend of ours gave us an opportunity to get one for a super good deal and I’m already declaring it the best purchase of the year and I’m so thankful to her! It would appear I’ve fallen in love with the French Roast sample included in the pack. This could get dangerous.

Today is also day one of Ken and I finally using our complex’s gym. I’m trying to stay moving after ceasing my physical therapy, and Ken has to be able to pass his 2 mile run after recently coming off his profile he has been on for years for mild asthma. The importance is high because he just GOT PROMOTED, and we are determined and excited to make this work and keep on keeping on with this. The Army isn’t easy and we really don’t love it much but we are so close, that we are in it to win it at this point.

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?