Pursuit of Happiness..

Happy. A word I have not used very often in the last several months.  I have been stressed, worried, sleep deprived, lonely and isolated at times and also spread very thin like so much butter on toast. My life became working, doing what I had to in order to keep the household going and my self care became secondary. I said “fuck it” to my diet and medication towards it and I know I have gained some of the weight I lost back in comfort eating (OM NOM NOM KRUSTY BREAD AND BROWNIES). I have not knit in weeks having finished my last project and buckled down to finish a committed embroidery project for the kingdom (SCA, FYI) which I did enjoy and looked great in my opinion. Most everything I did was what I HAD to do. Obligations I needed to fulfill. Happiness was fleeting and yes, I had brief moments of it, like when my son went a day or so without stomach illness from his chemo or that he ate solid food voluntarily, asking for it.  When my youngest would do his chores the first time I asked instead of repeated requests to take out the trash, pick up his Nerf darts before the dog ate them, do his laundry, etc.

These last two weeks, other than keeping a committed watch on my oldest to see if he spiked a fever, I can honestly say I have been happy.  It has come to my realization that my happiness is hinging on the wellness of my oldest of late. I worry about him so much with these treatments and how to keep him up both in weight and health. I’m constantly scrubbing his bathroom down. Diligent about his regimen of medications and shots and constantly trying to get him to eat food. I’m a bear about people using hand sanitizer that come to the house and making sure they are well before they come to begin with. If he is doing well, it allows my brain (as well as the rest of me) to relax and enjoy my surroundings.  This last week has been the best I felt in a while emotionally. Physically a little run down, as I managed to catch a sinus cold that lasted a day or two but has caused poor sleep patterns the whole week.

Last night, the neighbor called to let me know that today was the towns Apple Festival and its also the day that people do their last yard sale. This got me very excited! I love my town!   You’re probably asking…why?! Alright..side story. Everyone has seen E.T., right? Who hasn’t, right?! Remember the scene with all the kids walking around on Halloween? Glowing jack o lanterns everywhere, hundreds of kids walking around in glorious and creative costumes? That wonderful small town community you always read about? That’s what I have where I live. I love it here. The only thing I mildly dislike is the fact that we have to get our mail from a post office instead of having it delivered. Want to know why? The people of the community voted it to be that way so they could all socialize at the post office. And they do! Every one waves to you when you’re driving around or walking.  They stop to have a conversation..even in their car in the middle of the street. Its small but it has a lot. Dental office, fitness studio, gas station convenience mart combo, chiropractor, acupuncture, tiny pharmacy, bank, dance studio, barber, Dollar General, adorable library, a tiny town hall with some of the most friendliest people you’ve met. There is a great park a block away from my house. There is the fire house where they hold the cute carnival every year and the streets half shut down for it.  A Boy Scout troop at the local church. Local town sports association for the younger kids. The typical pizzeria, Chinese food, cutely named deli and a diner up the street. All within two miles of where I live. Down the road a few more miles is the just most wonderful little market called the Apple Bin that makes the best apple cider donuts and chocolate chip scones I’ve ever eaten. The store itself looks like something from Little House on the Prairie. Minus the spiders ALL THE PLACES, its my little bit of heaven and we found a wonderful house on a dead end street surrounded by trees in the middle of it. We even have great neighbors!

So, my youngest and his friend took a shift selling apple crisp at the festival for their Boy Scout Troop.  My husband and I, both lovers of a good yard sale, put the leash on Rolo, grabbed a couple bags (cause we actually are courteous and pick up the poo when he goes) and went out for a walk on the town to peruse the sales. Lots out there, but we settled on a replacement curling iron for myself (identical to the one I had but damn near new!!), and under the desk exercise bike for office jobs and a nice fur coat that I can rip apart for the viking garb. Its a lovely blond color and its rabbit fur. Hey, for five bucks, you cant go wrong with that. We ran into friends several times on our walk.   Rolo got to finally  meet a few dogs but he was a bit afraid around them even though they were all very friendly to him.  ALL the people stopped to pet him, say how cute he was, gush all over him and one couple even asked for the breeders name so they could contact her.  When we got back home, I ran a load of laundry and hung it on the line. We sat on the sun porch with cold drinks enjoying the glorious weather we were having. 70 degrees, low humidity and a nice breeze.  It was just a beautiful day and as I was sitting here waiting for LFR to pop in WoW, I realized I was happy and not just that but I had been happy for pretty much most of this past week.  Last night I started a pair of socks to put on the etsy store.  It feels good to be knitting again. I am doing that and working on an embroidery project.  I feel good. I feel happy. Im still a little tired, but it doesn’t damper the happiness I am feeling right now.

Kyle is at the halfway point in his treatments. Being over the proverbial hump and going down towards the second half feels good. The “road map” as they call it has a little over half a dozen more inpatient stays and that makes me feel good that the number is dwindling down.  We still have not made any plans till this is done in regards to weekend activities or vacations or the like. Just taking things day by day, week by week.  Make a Wish foundation came by to visit with him and ask what he wanted. We are unsure if they will grant it or not but, he asked for “a pool and a deck like at Aunt Colleen’s old house”.  They really couldn’t get anything else out of him that he wanted. Let’s face it, he’s a kid that knows what he wants.  We shall see if that is feasible to grant it. Its not like they can do anything with it now anyway being nearing the end of September.

The air has a crisp chill and fresh smell to it. Its suppose to be pretty chilly tonight. We have the windows open and even though my allergies are acting up from it, I love it. Perhaps we’ll light the fire-pit tonight and cook smores.  Right now, life feels pretty good. I hope this feeling lasts for a while. I know this whole thing has ups and downs but i am hoping for more ups than downs here on out.

Oh, and friends? There are so many of you that asked what you can do for us. The best thing you can do is keep in touch. Reach out to us..me. Call. IM. Email. Communication is what we need. Knowing you are still out there. Sometimes it feels like when the diagnosis was spoken, many said “let me know how I can help” and faded back from us. I need your company even if its just virtual.  With having to put our life on hold to give him all that he needs, it feels very isolating and a little lonely.  I miss my friends. I miss the SCA. I miss taking pictures. I miss wearing garb! I miss pageantry! The banners flying in the wind! The clash of weapons in the lists! The smell of glorious foods cooking and wafting from the kitchens. I miss life and the socializing.  Please, Stay in touch.

I am in pursuit of happiness everyday now. Im trying to find it in even the smallest things in each day.  I will not let this beat me and it certainly wont beat him. He is my ARMS warrior and he will beat this. I love my boy!

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Exhaustion, Depression and Stress..OH MY!

I opened Facebook this morning and saw a stunning picture of friends in front of glorious scenery on their vacation abroad and while I was so happy for them that they saw such wondrous views and had these fabulous experiences and OH MY GLOB that waterfall was just breathtaking….I burst into tears.  Not really the reaction I was expecting to come from myself. Quite shocking actually. Admittedly, I was envious of them. I adore them completely, I have no ill feelings in even the slightest towards them and their various trips they take I live vicariously through their pictures grinning from ear to ear and vowing I will go there someday, but I am envious.  I am finding a lot of late, that i am envious of what everyone is doing, the lives their living. They are living…..LIVING!! I feel like I am barely surviving each day and each day it is a struggle to do that.

The old saying that goes something along the lines of three steps forward, two steps back (or however it goes) I think is going to be my new mantra. When I feel like I get a handle on things, something trips me up or shoves me back a bit. This morning started with challenges (like waking at 3 am and not getting back to sleep) and try as I might to not let it set my mood for the day, it did.  It started with something as small as my son not brushing his teeth…for several days because he never unpacked his overnight bag from a sleep over. I mean..come on!! Yea, I know..he’s 12 and I should know better. I guess I underestimate my kids in hoping they will do basic hygiene every day without me having to remind them to do it. *smacks forehead* How silly of me!  Lesson learned: 12 year old boys don’t care nor think about these things. (Note to self: Start taping reminder notes to their mirrors and computer screens) I became very angry over this situation. Probably more so than I should have. I yelled. He cringed. The puppy cowered. I stormed out to go to work feeling like worse Mom in the world.

Now, today was to be the first therapy appointments for he and I. Being majorly stressed at all that has happened and is happening in our lives of late, I was very much looking forward to it. I should have known that it wouldn’t be that easy, it never seems to be in my life.  Mind you, i worked for a couple weeks with a case worker through my insurance company to find the right therapist that would fit for both my son and I. They took my insurance as well.  This morning at 8:30, the therapy office called to tell me my son’s insurance was canceled at the end of January and they couldn’t find me in the system. I felt my heart skip and start to beat faster and I think my eye even started to twitch a little.  After a call to the insurance company to verify we were still there and active, which we were, I called the office back. It was then they said they did find us, but, as it turns out, they don’t take the plan type that we have with said insurance company. However, they could set up a private pay price so that I could keep the appointment.  At this point I can now feel my pulse in my neck and temples and the angry tears started brimming in my eyes and I believe the next words I said were “Are you fucking kidding me!?” came out of my mouth and the lady uttered an oh my seemingly shocked to her foundations that I had the audacity to swear. Can someone please tell me why these offices can not check out the insurance eligibility prior to the few hours before the appointment?!  I promptly told her to cancel the appointments as I would not be keeping them since they didn’t take our policy and I certainly don’t have the funds to pay for their “private pay” fee.   Weeks communicating with a case worker named Johanna at our insurance company via email and phone calls and she couldn’t even tell that this place didn’t take my plan type?! Isn’t that this case worker’s job? To confirm these little details before saying Go ahead and make an appointment?  I called the insurance company back yet again and well, she couldn’t answer my call right now and would get back to me.  Right after that, the hospital calls to say I have to come back down (after I just left there yesterday afternoon from being there this whole weekend) so that they can train me on how to run a pump for an NG tube for feedings.  I was there..for four days, and not once could they have shown me this while I was there and they were doing them? After being told earlier that a visiting nurse would come teach me at my home, I am now told I HAVE to come back down and do a 3 hour drive because they do not trust outside visiting nurses. There is now a red haze on the edges of my vision.

I feel utterly beaten down, deflated and broken. Thankfully I am at work alone right now because I sat at my desk here and bawled in complete frustration and anger for quite some time. When that happens, the mind wanders through the strangest things and you reflect on a hundred things that have nothing to do with the insurance company but only further you’re growing depression over the situation and what life has thrown at you. My brain decided to reflect on my missed vacations due to health reasons with my husband last year..then this year with my oldest son’s..not to mention caused us to post pone our wedding and cancel a honeymoon all together. It reminds me of how poorly I feel i am handling my life right now which consists of work, trying to maintain the house and the rotating hospital stays for treatment or pop up fevers and try to raise another child who is also dealing with the stresses of a sibling with a major illness and acting out accordingly. Oh yea..and a puppy who seems to be have an endless amount of poop and always has accidents no matter how many times we take him outside to do his business. He reminds me of one of those play-doh extrusion toys!   In one end and out the other almost immediately! My brain decided to remind me of just how much life I was missing and all the fun I was not having. All the life we are not living.  I feel like the most selfish person in the world right now. I feel like I should be able to push all this aside and be that good strong person and focus entirely on his treatment and be that positive, uplifting supermom i should be. I am not. I feel like a failure on top of the extreme selfishness.

I know..this isn’t forever. I have had multiple people state that to me to try to help me to see the light at the end of the tunnel. FYI: It doesn’t help.  I know that when he is cured and back to his old self this will be something to reflect on as a struggle we got through and move in with our life.  But that time is not here yet. There are still months ahead of us in going through his treatment to reach that end goal. Hard, tough, stressful, painful months. We are barely half way in all this and I pray I can make it all the way through mentally and hell..even physically. I am trying to take it one day at a time so as not to feel overwhelmed, which is a monstrous feet in of itself. I have a feeling I will end up on some type of anxiety/stress medication and almost definitely something for blood pressure before the end of all this. I am fried.

I did warn you at the creation of this blog it wasn’t going to be all rainbows and unicorns and sunflowers, right? Right?!