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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Adventures in the ER

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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.

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.

 

Don’t Mess With a Wife on A Mission.

I wish I even knew where to start with this mess of a blog these days. Life just keeps on ticking and by the time I turn around, I’m choosing sleep over blogging. For weeks now at a time. I love writing but the perfectionist in me wants to sit down and write some quality stuff from my brain, not just go through the motions.

I learned a lot the past two weeks about being the family member of a sick person. Ken has had some serious medical issues and I have spent two weeks at the hospital, biting my nails, waiting, and playing psycho patient advocate to make sure he only received the best care and a solid diagnosis. We are still working on that last one but I have made some real progress. It is SUPER frustrating to know enough about certain conditions because of being no stranger to chronic illness yourself, but not being taken seriously by doctors because they don’t want to hear the valuable information you may have to offer. Turns out after two weeks of craziness and one exploratory surgery, the doctor walks into Ken’s hospital room and declares its one of two things I have been pushing to get on the table for MONTHS now, like it was his idea all along. GGGGRRRRRR!!! Get the fuck out doc! Seriously? Because all this is certainly news to me….*snark*

Before all this mess, we did have a really good Thanksgiving in DC with my grandmother. She really is the stable force of family in my life, no matter what is going on, and when I come up, it makes me happy to do things for her…..even when it’s braving those horrendous Costco trips. It’s all worth it. I taught her to use a Keurig this trip so now, its K Cup parties up there too, and while Ken shakes his head, I notice he does not hesitate to have his several cups of coffee throughout the day. For the record, the Cinnabon K Cups, and BOTH Starbucks Holiday Blend and Christmas blend coffees this year are pretty damn awesome.

Also, why didn’t I know that Amazon Prime was so awesome before now? I now have kitty litter and toilet paper scheduled to show up at my door every other month (along with a few other things) through subscribe and save, so I never have to lug it home again. BECAUSE I HAVE NO SHAME IN GETTING MY TOILET PAPER DELIVERED. For free. This could get addicting. Plus more streaming video is pretty awesome. I’m really debating getting rid of all major cable at this point because I really think we could survive off the streaming video services we have. Except for HBO. HBO Go is a gift to myself this year (for half off.)

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….

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.

And The Knock Out Goes to….

I feel like I was hit by an 18 wheeler today. Boom. It’s all about the chronic pain and fatigue up in here today. The crippling, take away your will to function kind of fatigue. If only I had a disability hearing today. It would be perfect. I could easily prove I was incapable of standing for more than a minute or real problem solving thought even without a sense of balance, or an active episode of neurological motion processing issues, which seem to be the only reprieve I’m getting today. I have actually been up since 6, out of the house at 7 driven to Ft. Lee and back and sat through a dental procedure with Ken and dealt with the Army’s bullshit over it today. All before 10 am. I have no idea how I actually accomplished ANY of this other than the foggy thoughts of wanting to just end it several times and sheer willpower of survival because I have no choice but to keep breathing. And I had to be the designated driver.

It’s disheartening to review my logs for my neurology follow up this week and realize my migraines have not decreased as much as I hoped, and in the past week in particular have been beating me to a pulp again.

Luckily now that I’m banished to the bed writing my confessions before giving up my breath of life for the day (dramatic aren’t I?) I was just joined by the BATCAT ever stoic in voicing his opinion of what should be done to bitch slap chronic illness right into oblivion…..

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Full of Angst.

PT was a total failure today. Despite my best efforts at thwarting nausea, I ended up in a mess of dizziness and puking less than 20 min in. Effectively canceling the rest of the session. However, my therapist finally got to see the effects of a “bad day” of the nausea and dizziness side of this whole vertigo thing, when it pops up completely out of the blue and I lose all control. Weirdly enough I have no real explanation for why the sudden attack. Some days it just “is.” Now I’m in bed, having ingested another does of crushed up phenagrin in water (yes I know it’s gross, but seriously, quicker delivery system and the zolfran isn’t accessible right now) and kinda hoping I get knocked out of my misery soon.

I’m supposed to be planning a sort of impromptu trip to DC this weekend, possibly starting tomorrow to retrieve my beloved camera, visit some kidlets, spend some time with awesome grandma, help her out with that ridiculous basement situation a bit, just look at my soul city a bit that I miss a lot sometimes. Now I am of course scared to move or make plans.

And my husband just came in to tell me there is a flood in our dryer because the massive amounts of rain we got leaked all the way into the house back through the vent and pooled in the dryer (something our leasing office denies happens). Seriously, just fuck today.

Confessions of an Accidental Eating Disorder

Let’s talk body image. Of course, I always think of these things in the shower, the really need some sort of dictation device that works in there, because I swear my best thoughts come in there when I’m musing over my shampoo. 
Anyway, I grew up as one of those “blessed” super skinny, bony, high metabolism, no curves, type of girls, who did not receive boobs until I was 18. Of course I thought I was ugly anyway, and in all honesty I DID NOT HAVE AN EATING DISORDER. I was just like that, no matter how many  Mcdoubles I ate while cutting class with my friends. And I smoked a lot of weed, so the munchies were often. I graduated highschool at 97 lbs and looking back at my prom pics I’m even a little bothered by my appearance even though I could do nothing about it. But, time moved on and a year later I grew some nice C cups, gained about 15, and still thought I was ugly. I know now, my issues with my appearance are way deeper that just surface. 
When I was 23 my mystery illness started taking off. And with that, so did my weight. The docs started saying, oh, here’s some STERIODS for some inflammation. WEIGHT GAIN. Maybe your pain is caused from depression, try these 6 million pills that your body will prove to be the most sensitive person on the planet to: WEIGHT GAIN, lactation, a freaky craving for alcohol (medically proven side effect!), twitches, psychosis….the list goes on. My brain does not like drugs that effect my serotonin or anything of the like, even though I have issues with panic, depression, and anxiety. A topic for another day. Anyway, the point here is over this massive journey of “what’s wrong with Kris?” I’ve morphed from “that skinny girl” into “DAMN WHAT HAPPENED” and a lot of people have a hard time understanding the reasons, without judging or being all up in my business about it. 
I also enjoy cooking. My husband and I enjoy it together. We like to feed people. And often we would, and since I dabble in photography, I would post dishes and talk about it with friends. So a lot of people also started assuming I was Paula Dean, using all the butter ya’ll! And questioning my diet out the ying yang every time a new picture would pop up. Even though it was a army of soldiers eating my food, not myself, and I loved cooking ethnic and with vegetables. So I’ve been fat shamed, skinny shamed, sick shamed, just shamed all around. 
But now a very weird thing is happening. I’m losing weight. I’ve lost over 50lbs in the past few months, and because I’m a shut in, apparently it’s a wow factor when people and doctors see me. I’m no where near skinny, because of the massive amounts of weight I put on over the years compared to my original size, but everywhere I go people say something. And I should take these compliments with grace and move on right? But the truth of the matter is, I carry a terrible guilt about it. Because, the weight loss, is because I’m queasy ALL THE TIME, I throw up A LOT, and I eat very little. None of this is by choice. Once again, I DO NOT HAVE A EATING DISORDER. It has been a by product of the severe vertigo caused by the vestibular disorder and migraines I’ve been dealing with these past many months. When I eat, I think about proteins, fruits and veggies, and staying hydrated to replace what I’m losing, because I can only handle things in small portions. And yes, SOMETIMES, I still get a 4 piece mcnugget from the dollar menu because I live with a full time college student and soldier for a husband and we are so tired and broke and once in a while cant bear to cook. Back off. 
But it’s hard to accept compliments on my “accomplishment” when I feel like a total fraud despite my attempts at maintaining a healthy diet as best I can while my body is working against me. Things are just never what they seem. 

Facebook Revelations

People might have noticed I’ve been a bit mouthier on facebook lately in general. But more openly about my health. I’ve done this for a couple reasons. Yes, I needed to get stuff “off my chest and just dispel some things, but also I remembered back to something I had done a few years back when I had some problems.  You never know what sort of response you’ll illicit from putting your business out there, and while I’m not one for putting my drama out there beyond my close circle, I do believe the spread of information is important. And every time I get surprising results. 


OTHER PEOPLE ARE SUFFERING AND NOT TALKING ABOUT IT. And I didn’t know. Other people were glad to know they weren’t alone, glad to know information I did that they could try, and glad to know that while other people were giving them a hard time, I would not. Not because I was whining about my life on Facebook, because that was never my intent. I just finally decided to fess up, throw caution to the wind and give people a peek into what was happening to my body, knowing there was a chance that I could be labeled a whole bunch of loser titles because of it. But I’ve been on the crazy train physically and mentally for a long time, I should not be afraid of that anymore. Not when someone out there is sitting at their screen and saying “Holy Shit! IT’S NOT JUST ME WHO FEELS LIKE IT JUST NEVER ENDS AND MY BODY IS JUST GOING TO FALL APART!” We all have issues, that are trying and valid to us and our lives, and if my story makes you feel not alone, it’s worth it.

I also have revived my personal writing (and it’s not ALL ABOUT being sick, but yes, it’s more technical about the journey of that and all aspects of life. And stories of my grandma soon. ) and I’ve started to share it out with others) but its also a read at your own risk project, so I’m only taking private requests at this time for the link.