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.

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.

 

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.

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.

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.

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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My Eyes Feel Like They’re Gonna Bleed….

Greenday’s Brainstew. Yes. This is my theme song for months.

I’ve been highly sleep disturbed for the past few weeks. Way more than normal. I really feel pushed to the edge here about this. I’m extremely grateful on the one hand to have solved “the mystery of the batshit insane migraines with vertigo” but it’s not like the hits haven’t kept coming.

I’ve had the equivalent of a nervous breakdown. I ended up seeking to be admitted somewhere for psychiatric help because I had no choice and I was totally freaked out and Ken and I knew it wasn’t normal. Like on a rating of 1 to INSANE I’m probably about a 8.8. You know me, down and dirty with the details here. I was pretty much the meal short of a picnic lunch, I could feel it and I wanted help. That’s a desperate feeling when you are considering giving up your shoelaces voluntarily just to get someone to listen to you because everywhere normal has a waitlist. (This is also not the first time I’ve sought immediate help, but its been a number of years, and the worst, and I thought I had managed pretty well on and off through talk therapy and sometimes some anxiety meds. I’ve also had a shitty time with a past diagnosis/doctor which has made some stuff hard in the trust department.) We have gotten some GOOD help this time after a bumpy start, if you didn’t know, obtaining mental health services can be a lengthy process, I’ve had to get creative and even wait for treatment! I’m finally getting the most comprehensive diagnostic evaluation I’ve ever gotten for Bi Polar disorder after meeting with a professional who has determined it was well worth the time and expense to see me for the evaluation and get it all official and shit for my medical history. I’ll be set up with talk therapy to learn how to understand this and medication management to work out a plan as well. All this is good stuff but as you can imagine, a lot to process. I’m on a mood stabilizer and a antidepressant right now to take the edge off with my anxiety meds but its clear by my sleep issues we haven’t gotten this right yet although I’m starting to feel better and there is a lot less crying and rage going on. And I’m writing about it in specifics. Openly. This is huge.

Going back to the Rheumatoid Arthritis for a moment. I’m in a huge flare since stopping the methotrexate because of the Migraine Mystery, and its finally been decided I will try a biologic medication for treatment. However, getting it all approved and between that and fibromyalgia, I’m feeling pretty shitty with pain, so sleep is also a bitch when you are waking up due to that lovely swelling and burning in your joints or just overall uncontrolled aches.

I realize this post is 100% venting, but its my blog and I’ll cry if I want to. Also, I’ll make as many musical references if I want to. I dare you to stop me. I’m delirious.