There’s No Place Like Home.

Going home is always so cathartic for me. Traffic sucks but I just love being back in DC even for just a few days. I’m excited to hop on the metro today for old times sake, a little of the traffic nonsense on the Beltway was even comfortingly familiar. Today I woke up to DC news. I learned that a taxi accidentally followed the Obama motorcade through the security gates and is in hot water, and another guy tossed a back pack of nothing in particular over the White House fence. Just another day in the district. But still its news that I miss hearing because I don’t get to hear about all the hotspots and suburbs I’m familiar with anymore. Funny, sad, bad, memories flood back and I enjoy it all as I watch TV, drive the streets, shop in stores or eat out and meet up with local friends and family. I do not hate this place, not at all. Its my heart. It’s just the traffic of having to plan my day around 6 hours of whats considered “rush hour” that I hate.

Today we are taking my grandmother refrigerator shopping. On the metro. As city people do. I’m expecting her to act lost just as usual, towering over the crowds, even though it’s at a stop we are both crazy familiar with. What would really funny is if we had to actually take a fridge home on the metro, but alas, they deliver for free. I’m pumped about the metro anyway because I spent half my life as a subway rat and it brings back all sorts of crazy, creepy, hilarious and even annoying memories for me. I might take my camera and pretend to be one of those tourists I hate so much.

 

The Doldrums.

Well, I have to admit, I’m currently on the downside of the bi polar roller coaster. I have entered the pits of despair depression. Most of the past view days I’ve functioned as little as possible, mostly in bed, or curled up in the bean bag chairs down stairs, taking Ativan, crying and waiting for Ken to come home. He’s done this huge thing, finished up clinicals, graduated college, and I’ve gone from, ready to conquer life, decorate my house, be the supportive superfriend, to barely being able to take a shower and care if I eat from one day to the next. Today’s food conversation went a little like this.

Ken: What do you want to eat?

Me: self-pity salad

Ken: and drink?

Me: Sobbing soda.

And instead of this making me laugh at my own jokes, I literally burst out sobbing and apologized for being who I am to the husband I love so much. Who I don’t deserve, not when my prognosis in body and mind is going to be this for the rest of my life. I know it’s not normal or ok to grasp onto that tiny piece of happy mania when I’m so sad I can barely pick myself up off the floor, but I just want a tiny spark of life to return. I hate this feeling. HATE IT. It’s been such a player in my life for as long as I can remember, because my depressive moods tend to last longer than my manic ones, all I have are memories of despair, suicidal thoughts, anxiety, hopelessness and fear.

I’m going to DC tomorrow to spend some time with my family. My niece and nephews always help my spirits, and my grandmother always comes through for me to help our needs, and I enjoy being with her. I just hope that while they work their magic, I can let them in enough and not have a total meltdown and go mentally comatose while I’m there. I’m afraid of that now. That family is going to start seeing the real me, the crazy me, because I’m trying to be truthful about that person and get her as healthy as I can.

And I’m going to take my friend Kate up on her suggestion on investing in crayons and drawing therapy next week and try out some mandalas and zentangling myself.

My Husband, The College Graduate.

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.  ❤

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. 

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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.

Move it Along

I’ve been confronted with a situation lately where I’ve been given an ultimatum, “change who I am so we can maybe kiss and make up on THEIR terms” or just keep moving on. It was actually tough for me at first believe it or not, because when that situation involves someone you considered a best friend things just get complicated. I peice of me is emotionally attached to this person and wants nothing more to apologize, forget the whole thing, and do what it takes to rectify the situation. I miss them in my life, because they were around for so many years, and there are good memories to be attached to that. Upon taking some time to collect myself however, I have to stop and think rationally, and what’s emotionally healthy here and what the reality of the situation is. It wasn’t always what it was cracked up to be. And now this. This person already self righteously cut me from their life for two years without so much as a word to me all the while making it known to others that she had a fundamental problem with my lifestyle. Which apparently means, since I don’t believe in god, I’m against him, and I also actively hate her religion and try to pull others out like I’m a stop on some underground railroad. Which couldn’t be further from the truth, as I have close friends still involved in the church and we have very clear understanding of one another’s beliefs and do not try to change each other. I have my suspicions her issues with my “lifestyle” have deeper meaning as well, that I’m not going to get into here, but if thats true its a 100% no go in my book for things I can tolerate. That’s a subject you DON’T get to make me choose or feel bad about in my life because you will lose EVERY SINGLE TIME.

What bothers me the most is the simple act of the one promise that was made to me was broken that our entire friendship was based on. No matter what our differences, I would just not be dumped because god has instructed her that unbelievers are beneath her in her position in life. Because thats happened to me with several friends since leaving the church, friends I grew up with since I was a toddler. And that’s exactly what she did in the end. My trust issues have taken a huge leap backwards, in both trusting people who profess that faith helps them do good works, and in people who pretend to be interested in my friendship altogether.

I still hold the few near and dear to me in the same position as before this happened. I’m not losing trust in them, because that wouldn’t be fair when they have done no wrong. If anything, I’m grateful to have such friends and family in my life left that have stuck around me through my illness, my crazy times, the hard times Ken and I have faced, against the odds, and the times when the clouds have broken and we have caught a break every once in a while. That accept me when I fall down onto the sucky friend train, and wait for me to get myself right again, because they have faith that I will. It’s those friends that I want to keep around, not the full of one sided conditions, walking on eggshells, constantly making me second guess myself for the wrong reasons types of friends. So thanks guys for enriching my life with your intellectual conversation, everlasting attempts to understand me, and always willingness to offer your ears, even at 3am.

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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.

Pieces Of Me

I’ve been feeling rather split lately. Ever since my breakdown last year and getting the mental help I so desperately needed things have changed for the better, mostly. The crying has stopped, the rageful outbreaks have stopped, I can drive my car again given I’m not too fatigued to do so. I’m more the task oriented me, the one who uses lists to get through the day, who recognizes her symptoms and *tries* to head them off at the pass and I take my medication and see my therapist faithfully. But something is different too.

I asked people if I would lose the part of me that I really liked about myself if I took these meds, my sort of whimsical, sarcastic, over energetic creative spells I used to get. I called it inspiration, and when it hit, it hit HARD. I could write for days about things, I could redecorate my house, I saw the humor in EVERYTHING in life. I feel that girl is just not there anymore. I don’t laugh with the same intense joy I remember, and I don’t get the same thrill out of writing. In fact, I question if I’m even GOOD at this now.

I also wish more of my anxiety was under control. Thankfully, as mentioned before, I can drive again without inducing a panic attack, but I’m pretty much overwhelmed by most everything else. Unpacking has been a nightmare. Half a box in, I look at the remaining contents and go “nope, can’t even handle that” and I walk away. I’m in the middle of a chronic fatigue crash as well, so remaining awake and functional to do this has been crazy hard, which only heightens the anxiety and feelings of worthlessness.

I know my health and stress levels play a factor in all this because I have a huge amount on my plate. I also know that the responsible thing to do is to NOT let myself go crazy again if I can help it, to take my meds, and to care for myself and Ken as best I can. However, I cannot help but pine for that little piece of creative crazy that I lost when I decided to become normal.

 

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.