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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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:

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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.

 

Dear Fatigue. You suck.

Today I dedicate this post to fatigue. I’ve been entirely too fatigued to post a lot lately. And I use the word fatigued because it’s different than tired. It’s more extreme and when it washes over you it feels different, it presents different, and for me at least it can make me want to pass out right where I stand.

Every few weeks my body switches it’s cycle when it hits. Sometimes it’s once a day, sometimes it’s twice or more times a day. Right now we are at twice or more a day. Which is really inconvenient because it means I have about 2 hours to be productive between spells or I have to push through and hope someone is there to help me though it because it could be dangerous with how foggy my mind becomes, someone to drive me around, make sure I have chairs to sit in, talk me into consciousness the whole time….

I’m also on a whacked out sleep schedule where I go to bed early and wake up several times a night. As of this moment, I’m banging this little whine fest out at 4am because I’m awake and angry about it, and having a moment of exasperation.

Also, winter, and dry heat inside my house can go right to hell too. I’m thankful for heat, don’t get me wrong, but it’s tearing up my nose and sinuses like crazy and anyone living in a dry heat environment knows how awful that can get. I’m there, the worst scenario.

And now I shall take my leave, for the cats are obviously fighting out whose turn it is to watch over mom at the moment, on the bed and need a intervention.

If This Were a CD, My Thoughts Would be Songs

I bought this nifty keyboard case for my iPad so it would help me you know….write easier. Guess what I haven’t been doing? A whole lot of writing, I can tell you that. LLLIIIIIFFFFEEEE. I’m living it, I want to share it but I’m just too damn tired to be bothered sometimes to be honest. SO, here’s a post of non sequitur thoughts that have some to maybe no relevance to my life but are in my head.

My brother turned 20 and that’s neat. He is the youngest and he is getting all “growed up.” I also just had a semi frustrating dream about him last night in which I was SUPER pissed off because he was being a jerk and refusing to do the dishes right.

Ken, the CATS, and myself are all bumming it at grandma’s this week. Yes, the cats too! It was a family road trip to DC this year. “Over the river and through the woods to grandmothers house we go!” The cats were less than pleased with the car ride but they are treating this place like one huge cat resort where love is dispensed at every turn and treats reign down from the sky. I think they are going to be ok.

Every time I merge onto the Beltway this week I end up regretting it. Obscenities are screamed, road rage is had. DC, baby, I’m home for Christmas.

Danica Mckellar, “Winnie” from the Wonder Years, was on TV talking about doing a lesbian make out scene and I felt REALLY old.

I’m going to have all sorts of fun in a few weeks with electrodes and a bed. Nope, its not some sort of 50 Shades of Grey thing, sorry you got excited. It’s a sleep study to be evaluated for sleep apnea and restless leg syndrome, one of which I can pretty much already tell them I have. I mean, out of control twitching? KINDA HARD TO MISS. I did not even bring this up with the sleep doctor, he picked up on it from my intake paperwork which was nice. I did not have to go in there sounding like a hypochondriac, my medication list I gave him was already mind blowing enough.

Speaking of, my SSDI case is moving forward. Ken and I both received extensive quality of life sort of packets to fill out regarding my daily pain and activities, blah blah. We have 20 days to complete it. Fingers crossed.

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….

Summer In the City




RVA, a set on Flickr.

Today, I have just a quick post of a photoset of my activities around the city. I’ve been trying to get out a bit and photograph some of the interesting things in Richmond, including the sites of the Richmond Mural Project, (there will be 23 sites featured total) and some of my favorite city places I’m discovering along the way. This is what I have so far, with what I hope is many more to come.

Of course feel free to browse my photostream and other sets as well! I love visitors! When you are chronically ill and hopelessly busy or tired sometimes hobbies seem to take a backseat so sharing them maybe will inspire me to keep at them and remember that I AM a person beyond chronic illness and all this mess lately, and remember the things I love.

I’m My Own Spy, How Cool!

I was not able to meet with my neurologist this past appointment but rather the Nurse Practitioner in the practice who was probably about 60% annoying and about 40% just ok at her job. I really love it when medical professional tells you “This is totally manageable” and then proceeds to strip away every last piece of your life you had, to manage it and say “but your issues are just so complex you see.” Shut. Up. Now.

So one of the conclusions of my neurology appointment is this:
I’m left with the forced choice of getting off the pain meds in favor of seeing if the migraine days can be lessened due to a narcotic induced backlash. Not no migraines, just a couple less migraines. So….bring on the full body pain apparently. While starting the full body PT for the arthritis and fibromyalgia to test my mobility and fatigue limits and other thresholds. More ammo for the old medical record there to prove I’m trying everything to be compliant here in my own treatment.

(Sidenote: Also if one more new doc asks me if I’ve “tried lyrica, cymbalta, savella” after seeing I’ve had fibromyalgia for 10 years I’m going to do something very inappropriate. It’s like asking me if I’ve ever “tried toilet paper” after taking a dump because I’m having trouble with cleaning my butt. WE HAVE ALL TRIED LYRICA, WE ALL KNOW ABOUT IT.)

The exhausting notion of writing down everything in my life from what I drink, eat, smell, think too hard about. To weather conditions three times, every day. Almost to the point of when and how much I shit per day. All in the name of migraines. So I can look back at some point, and have that “ah ha!” moment, and realize that eating fava beans, a steak and jelly on the same day where there is in a cloud in the sky will surely set off a migraine 24 hours later so I need to be sure to AVOID THAT SITUATION AT ALL COSTS. Just one of many potential variables I could discover.

I mean I have no concerns of government monitoring at this point. I AM THE NSA, recording the every whim of my own body and thought.

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My sweet chronic pain app.

Now let me clarify, logging my headaches and tracking my pain logs are not new concepts to me. I have a wonderful app on my phone and I have done it for months. This app is SO extensive, it’s overwhelming. It’s such a joy to do in the throes of excruciating pain of a migraine or the mind numbing fatigue of fibromyalgia too, I’m here to testify. But having explained to me like it’s this new full-time job is just reiterating the fact that I really have no life outside of monitoring what goes in and out of my body, paying our bills, dealing with family, military, getting Ken through school, my other medical appointments, and trying to get up every day and breathe.

And still facing this large faction of my family that feels as if I’m using my health as a crutch that I refuse to “just get better” or I’m “avoiding actually getting a job” makes me want to burst into tears constantly.
I swear amongst my coping issues, a huge weight off my anxiety levels (which were also brought into question here, as if I might not be aware or unwilling to do something *silently screams* about it) would be some actual acceptance, so I don’t have these voices in my head that I know I’m going to have to contend with in person next time I make a phone call or a trip home.
Hence why when Ken and I discuss these things we totally reach the conclusion sometimes that we are totally fine in our little bubble because Ken lives with me and never ever has expectations of me that are unrealistic. He’s united in the same hate for the way I’m treated. I’m so lucky for having that, he deserves a parade every weekend. If I only wasn’t too sick to do it. I have some groupons saved up my sleeve though for some kick ass dinners though, that I’m hoping we will be able to enjoy. When we have more time and money this guy is getting something totally indulgent and D&Dish.

A Bit Slow On The Uptake

One of the problems with being chronically ill, is that sometimes being sick escapes you. I’m just now realizing I have a virus/bug (don’t get all science-y on me people, you know what I’m talking about) for the past few days, only since my symptoms only felt sorta substantially worse, I have been writing them off as just a bad few days, instead of actually being really sick. I’m on top of it now, and hopefully this will be over soon, and I will only marginally feel like crap.

A bunch of people knew I had a follow up neurology appointment on Friday, and I’ve started a new full body PT program, and I’m working on that entire story, but it’s taking me a while, like DAYS to write, due to being sick, so, that’s in the works. It’s an interesting rant, but tiring. That and the other even more fun ideas in my head I totally want to write about but don’t have it in me to do just yet.

So, we are just taking a brief interruption from my regularly planned programming while I go and kick this thing’s ass for a minute ok? Thanks!

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Trying To Ration My Spoons.

Ken has his appointment with pain management today, to get further insight on his back. I wish we could get more answers in just one appointment, but we all know this is a process, so I don’t know if I will know very much even after this initial meeting. I need to pick up my own records (all of two visits before they moved me on to another specialist) and then I need to get the records from the neurologist (the other specialist mentioned previously) because I need to have them to continue with my initial filing for SSDI.

AAANNNNNNDDDDD…….. Speaking of SSDI, they just interrupted this post to call me. Because this system is unbelievably annoying to deal with as well. But I knew that going in, and I’m keeping up on my research to be prepared to deal with them. I’m going to have to cash in a lot of spoons to deal with it.

I’m comparing everything to spoons these days. Its based on an article I read for a way to help others understand what it’s like to be living with a condition that makes you take even the smallest of tasks for granted. Read up here. I’ll be talking about spoons I am sure in the future, so this is where it came from.

The Spoon Theory