My other new stress reducing meditative art endeavor. I’m really loving the creativity of doing this one.
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
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.
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.
Big things have been brewing here at the Woodlands. Ken finally got the call that he would be starting his clinicals at the VA Hospital, starting…..today. We have been waiting for this phone call since the beginning of January and were growing worried he wouldn’t get in and therefore NOT graduate on time. HUGE sigh of relief. On the stressful side this means 10 hour days, and no car for me at home for him to catch up for time lost, but we will take it. Anything to get this done.
However in the same day we also had to make a HUGE decision. Our current lease is almost up so we were sent our lease renewal papers. The new rent was just too high to justify paying for the house we are in and all it’s problems. So we have decided to move, or transfer units. We were lucky enough to get a renovated unit, that while it’s only two bedrooms, it has a basement rec room, so it’s actually a LARGER floor plan for the same amount of base rent that we pay now. Having two furballs though to pay rent for is going to raise our rent uncomfortably, but at this point we have no choice. Until Ken has a steady job, we can’t prove income to move anywhere cheaper. It’s more important than ever I win my disability case.
So we are moving in April, and I’m already obsessively packing and purging. I have a huge donation for Purple Heart, a veteran’s charity, of clothes and household items we really have no need for, and so much of our stuff is getting packed away because it’s just clutter it’s unbelievable. I’m so stressed and excited to have a new house and floor plan to play around with, but I want it to be nice and clean, not overstuffed and cluttered. I’m a minimalist, Ken is the pack rat. My therapist probably thinks I’m a special kind of nuts at this point because to be honest, I’ve been freaking out over the stresses of the possibility of moving since October, and now that it’s actually happening, Ken’s going to have to hold me back from falling over the edge. We have moved 8 times in 5 years, yay Army! , and I’m so moved out I have a complex about it now. So, there might be some moving talk coming up if I forget to take my Ativan.
Recently we lost a very dear member of our family, my grandfather. It’s hard because he is the first grandparent I have lost while I have been alive (my other grandfather died before I was born) so a part of me has no idea what to say about it.
I know he’s been sick and struggling for a long time. Now, I’m a very rational person, and my first thoughts are, I just want his pain and suffering to be eased. It might emotionally hurt us, but we have to accept what is meant to be for him. I think of my grandmother and aunts and uncles and how they are going to cope and I’m upset for them. My father has tried very hard to be there through this whole ordeal and its been hard on him. My grandfather was a good man, a kind man, and deserving of everyone coming together to show him the love and time he needed when he needed it the most. I’m only sorry I do not live close enough to have the means to be of more of a help myself.
I have thought about death and what it means to me. Because of my position of not having a belief in a god, I also do not believe in an afterlife. I am ok with that. I do believe we all participate in the cycle of life, that we originated from stardust like everything else on our speck of a planet in this vast universe, and we function here within each other’s lives for the time we have. And afterwords we go on to continue to feed the cycle of life, and that’s beautiful. We leave behind our accomplishments, our memories with our loved ones and a legacy through our families that is never really forgotten. My grandfather had his own faith which he was very strong in, and perhaps he is right, what’s after death is certainly something no one knows for sure. Anyway I look at it however, a man with that much love to give deserves nothing but the most beautiful it has to offer.
So, here’s to the man who used to call me “boy” when I was 4 just to hear me squeal “BUT I’M A GIRL GRANDPA!”
Here’s to the man that I used to fight my cousin over trying to determine who was his favorite granddaughter.
Here’s to the man that always had PB&J and, barrel drinks and slices of American cheese in the house for me.
Here’s to the man that was always there, watching the family chaos, but genuinely happy to sit back and embrace it all. He never forgot a grandchild’s name, which is amazing considering there are 19 of us, and for me, knowing my grandpa was at a gathering, somehow made it complete.
And here’s to the man that brought a huge family together and made us all better people for it.
It’s been 5 days since the quarantine at House Woodland began. We arrived home on Sunday with Ken feeling pretty bad, sore throat and congestion. After a terrible sleepless night, for me, due to his snoring and angry retorts when I tried to move him he was full on sick the next day. We managed to attend a doctor’s appointment and head to the grocery store for what would be the last time in the near future.
Day 2, Ken had moved to the couch so I could get some rest, but it didn’t matter. Whatever this was, I succumbed to it anyway. Sore throat, nose at a full stop, and chest congestion out of nowhere. Migraine city had come for a visit too. I am glad now I withheld my Enbrel this week because that would have only suppressed my immune system more and this hell would have gone on a lot longer.
There was soup to be slurped and Netflix to be watched, and dual moaning was heard across the Woodland abode.
However in an effort to brighten our spirits we did make one kick ass french cut crusted rack of lamb for New Years dinner, that was hands down the best thing I have eaten all year. Being sick wasn’t going to suck ALL the joy out of New Years even if we did pass out by 10 and there was no toasting or kissing.
Stir crazy began to set in the next day and between coffee, naps and TV we proceeded to make one hell of a dent at purging the junk on our downstairs floor for our upcoming move. I’m more than proud of us, and doing it while sick? We are beasts. We are now slowly working on aspects of the second floor believe it or not.
Like previously stated, it’s now day 5. Symptoms have improved on both of us, but we are not ready to be released back into the world just yet. We gaze out the window longingly but the harsh freezing temperatures of the outside air would harm us should we venture out I’m sure. I hope we survive this. I’m writing to document our last days should we turn on each other and fail to successfully co inhabit this domicile any longer.
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.)
I’m going through one of those spells where I don’t feel the urge to write very strongly. Maybe I just have no content, or maybe the content on my mind is just too overwhelming for me. Either way I just don’t know what to do about that. My life has a very specific set of issues right now, and I just feel redundant repeating it all the time when nothing fun, or hilarious happens in between. It’s just illness, with some pain, throw in a little “hi, I’m still crazy, the doc said so!” with a dash of “OMG iOS 7 came out and it took forever to download on my iPad and iPhone! (First world problems.)” Of course there ARE other things going on, and while I’m ok with talking about my issues most of the time, when it involves the privacy of others, well, you know…it’s only fair that this isn’t a place for that.
So, I’m just waiting, waiting for the writers block to lift I guess and the words to become interesting again.