I’m alive. Packed with thoughts. Wanting to share but all locked up inside. But I am still here and I’m sure the floodgates will open soon.
So it’s been a month since Ken graduated. And things are hard for us. REALLY hard. I’ve never felt this uncertain before. Ken keeps going on positive interviews and then not hearing any news for weeks, or in one case an internal applicant suddenly popped up and got priority over him. Everyone is impressed with his resume, he is a friendly interviewer, AND he has the degree with 12 years experience there is just so much competition out there apparently. As his wife, I want to just bust into these places and tell them what talent they might miss out on because I used to work with him as a colleague as well, but ……that would be inappropriate. So here we sit, bills piling up, my SSDI case on appeal, no jobs, being bailed out by the greatest family member in my life. And I feel horrible about it.
It’s why I took my friend’s advice and started this therapeutic art thing. Its kinda what’s keeping me engaged at all with life, even if I’m just focusing on a piece of paper, a pen and the creative side of my mind. It’s working for the anxiety at that moment. That’s also the problem. After that moment is over, it’s anxiety city up in here again, and I start getting manic because its one of my natural actions to anxiety. Either I want to soothe myself with going and playing with the world, money and consequence be damned, or I go into the dark depression where I want to be swallowed into a black hole and ignored by everything with a pulse for days on end. I have anxiety meds, but i really only use one of them at night to sleep. I worry about the other, because I’m just on so much medication for other health issues it kills me to accept one more. I don’t know WHY think the Ativan is less important than the 17 other pills I take (by last count), but something in my subconscious feels its something I can sacrifice.
It doesn’t help much either that Ken will be leaving for a month in a couple weeks for Ft Knox and we are going to be awaiting some more orders for him to be gone another 3 months to Ft Sam in Texas. But hey, its pay right? We are even looking into going back on active duty on the reserve side because a place may be opening up in his current unit, but that is in its baby stages of being worked out right now. Don’t want to jinx it.
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:
My latest zentangle project finished. This one was really fun and very therapeutic. I’m pretty proud of myself for completing this.
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.
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.
My First Zentangle
Today is a rather big day in the Woodland house. It’s the last day of Ken’s clinicals, but that signifies something larger for us. It means, that after 3 years, KEN IS FINALLY A COLLEGE GRADUATE. He’s earned his degree and done with school (for now) and it’s time to move on to the next phase of our lives. We have trudged through financial aid, student loans, GI Bill benefits, all night studying and keeping the weirdest hours on the planet, and survived with our relationship in tact. I’m so proud of how he’s been excited through the whole thing, given it his best and been recognized for his hard work along the way. Personally I would give him ALL THE DEGREES, but then again, I’m biased I suppose. Now onto the job market with us, which is a daunting place and already proving to be somewhat of a nightmare.
It’s hard knowing that now you have next to no income coming in, bills to pay and a time limit until you could possibly be out on the street. We have been struggling for 3 years teetering on the edge of this, but now that school is over and absolutely no more loans or aid is coming, it just ups the stakes to epic proportions of stress and scariness. And with my SS denial, my health taking a major crash lately, and life that doesn’t stop just because you have problems or are sick, I’ve cycled down into a depressive state of my bi polar roller coaster. It’s definitely not mania anymore. I just want to curl up and disappear from the world to take my existence away from being a burden from all those my life effects. At least temporarily until I have something better to offer them, to make up all the craziness that has come out of my being alive. I do appreciate though the support system I’m building with a few people who understand and are even experiencing the same types of struggles. This is honestly a first for me. I’m glad I’m not alone, even though I can’t fix them, or myself in the boat we are all in together.
But we should be ok this month, and that’s what I’m going to remember when Ken gets home today, and for the rest of this week. This week is a celebration of an official college graduate at Casa Woodland. ❤
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.
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.
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.