For those of you that support it, Happy 420 Day to you! 🙂 Hopefully we’ll see at least medicinal nationwide to improve this weird year! 🙂
Yay! No more H1N1 self quarantine! I came by that status the hard way, though, as any Spoonie probably would.
I couldn’t get over the symptoms after I posted about my delayed recovery and realized that I most likely had a sinus infection that was causing the fever (which is a way different fever than normal people get and the unaware are so disbelieving of that), which kept extending the self quarantine as possibly still contagious. So I contacted my doctor in hopes of getting an antibiotic, but the continued symptoms and my immune system issues really concerned my doctor, so she referred me to a colleague in KC, K, who works with a facility that works with the CDC, and I had to do this online questionnaire. After review they decided that they felt I was high risk for having COVID and wanted me to go to the facility at KCK for testing during this certain time frame.
While this response was making its way to me, I began to present with an acute dry cough, wheezing, and shortness of breath, with a lot of pain from pulled muscles due to the coughing (and the fibro having fun, I’m sure). The only way I could breathe easier was by laying on my side almost flat and not moving, especially not being reclined or sitting up facing forward. It got bad enough that L called a Topeka hospital (no way I could make a ride in a truck to KC with this going on!) and had to go through an online triage basically. They decided I needed to get to the respiratory center they set up as quickly as possible. We weren’t really sure what this new center was that was created to respond to this outbreak, so we packed my “go bag” that is prepared any time I may be at risk of staying in a hospital (you learn to plan ahead when you have a chronic illness). Well, I laid on my side on the bed, trying to dress, and he added the last minute items to the bag, since I had one ready for a possible trip during the whole H1N1 thing.
So, we quickly (okay, very slowly because I could barely walk without falling to my knees coughing) went to the address the nurse gave. It was a mini tent city erected in front of the hospital’s north clinic. People direct you to drive into the first tent and direct the flow of vehicles, while workers move between the vehicles doing their assigned tasks, such as one for symptoms, another for vitals, etc. With each worker the driver is directed to the next area for the next triage area, with directions to keep windows up, patient is masked except when asked to remove it, etc. It’s kind of hazy, but I think at the second tent is where the doctor did the drive up exam. He confirmed that it sounded like a bacterial infection (sinusitis), but with my high risk status with L being among the public at times and my compromised system that was even further compromised, I got to have an H1N1 nasal swab and a COVID swab, for good measure. In less than ten minutes the H1N1 test came back negative and the self quarantine was no longer needed then. He prescribed an intense antibacterial prescription and we moved forward to the next swab section. The H1N1 was like a small bendy bottle brush jammed up the top of my nose and I kept wiping under my nose, thinking I had a bloody nose. I laid sideways on the console while waiting for the next worker and it hit me how surreal the whole experience was. And then SHE came to the window. He rolled down my window and she asked me to pull my mask down, and told me instinct would be to pull back, but don’t, so I pushed my head back into the seat cushion. Good thing I did because that thing removed mucus somewhere near my eye socket, because that tear duct immediately started streaming. *laugh* Holy biscuits and gravy! She closed the test container and said to go ahead and leave.
As we were leaving it hit me how bizarre of a situation we had found ourselves in and saw firsthand how intense this Pandemic’s treatment is, even in our neck of the woods. Medical workers in varying degrees of protection, from droplet protocol all the way up to a sealed suit with breathing unit, and seamless triage the whole way, with preparation to send suspected cases to quarantine. Sitting in the tent city was like something from a science fiction movie or alien visitation thriller. It was a mixture of feeling like a zombie checkpoint and a prep station for scientists interacting with some unknown alien craft.
It was definitely the safest exam I’ve ever had, despite it all, because I wasn’t exposed to any additional conditions, which is a first. It was definitely an unexpected and intense event in my life, so I can mark such an occasion off of my bucket list (I’ve lived an odd life with incredible and strange occurrences in it, so I wanted to make sure to have one more on my bucket list. Lol). And both nostrils really hurt, but I could breathe through them both for the first time in weeks, since they swabbed everything in my sinuses up to near my brain, it felt like. *smile*
I’m now on my fourth day of the antibiotic and responded well almost immediately, so my usual post-illness sinus infection got really bad at one of the worst times in this century. I’m thankful for the incredible workers who are on the front line of this and it increased my awe of their bravery by 100%. While I stay laying down to ride out the massive side effect of nausea that my Marinol doesn’t come near stopping, I’m still waiting for the other test results, but my cough has resolved except when I try to actually do something. I have an incredible other half that braves exposure to get my prescriptions, foods that will help or may stay down until the current prescription dose’s nausea lets up, and takes care of keeping me settled. It’s funny that in all the marital advice I was given almost 16 years ago, no one ever said that you can fall even more in love with someone when the times get bad and your partner decides to weather through those times with you. In the meantime, I got us an annual subscription to BritBox, slept nearly 24 hours straight at one point, and we had a reclined “date movie night” streaming a rental movie early this morning. *laugh*
I wish there was something profound I could share, beyond my experience, but it really just boils down to having gratitude for those that are at risk working near others or in medical/ emergency services, those that keep working for us to be home and upset that we have the time off that we usually wish for (although everyone would prefer for vacation to be taken on their terms, paid, and hopefully one in which they can fully enjoy themselves, of course), and also gratitude for the technology that helps keep us connected. Drop a text, share silly pics on SnapChat, do a Zoom chat, or even call (*gasp*!), and then we aren’t alone in this. It is a scary world right now, with a lot of grief along this journey, but humanity has survived other threats before. Kindness, respect, and gratitude are our best bets for making it through this as better people who will someday recount how awful 2020 started out, and how we, as a collective, made it through.
Stay safe and reach out. Isolation breeds depression quickly, which is just as dangerous IMO. If you feel alone and you don’t have others to reach out to, you can reach out to this (possible) stranger and know that someone will be there to chat with through this. I know how deadly depression and isolation are, so please don’t hesitate to reach out, even if you don’t know me personally. My world grows infinitely better with each new friend. 🙂
I’ve been a bit discombobulated and quiet because I’ve had H1N1 for almost a month now, and it’s taken quite a toll on me. I may be getting a little better right now 🤞🏻, but have to go without a fever when not having Tylenol, and then it’s a ten day wait to end the quarantine, but haven’t managed to make it through the waiting period yet. Lol This social distancing and concern over the pandemic is kind of meh for us right now, since we are all ready following droplet protocol at home, I don’t leave the house, and we have a quarantine sign up so no one stops in and gets exposed. They even shut down Goodyear Plant for now, so L is home and not exposing me to anything the other plant workers come to work with (nobody ever takes off for being sick lol). Other than people hoarding basics we need and my online grocery ordering not working, so he has to actually shop, things are the temporary new normal for us all ready. (And yep, started Tamiflu the very day of exposure, so my doctor did the best she could, especially when she left the country the next day for a couple of weeks. Lol)
Insomnia hit despite my fatigue, so with L being off and us both still on graveyard shift sleep hours at the time, he helped trim my hair up and dye the undercut for me. It was a first for him on both and my first with an undercut, so we had a learning curve. Unfortunately my face is a bit red and splotchy in the pic because my seborrheic dermatitis has gone insane since I caught the virus. However, the debut of straight up Ruby!
It was a little surprising to have some areas, which I suspect have been affected by my meds, soak up more dye and come out a bit ginger to me, but it’s kind of fun (probably after a few weeks of it I won’t still think that, since it’s only been a few hours lol). Any thoughts on what the next tone should be? *grin* (Has to be a non-peroxide needed type with the damage my meds cause.) I’m thinking after this about going black with amethyst tint to it, but not sure, so I’m open to ideas if you have one.
In these crazy times I thought a fun little post of crazy hair might be a nice relief in the inbox, with so many being about viruses and sad stuff. Stay safe and compassionate! 😊
*Lets out a whoop* I completed my first step of walking on the wild side and enjoying my life.
Although I usually try to avoid posting pictures of myself, since that’s just not me or what I want to write about, here goes!
After a little bit of time on a step stool and buzzing hair below the clip where I’d piled the “don’t undercut” hair, and attempts to make an even guide line for the undercut using mirrors without my glasses, thankfully my mom came to the rescue. 😂
And just for fun…
I’ll be dyeing it Ruby Red, from the “flaming reds” collection, soon, so I’ll be the most daring I’ve ever been with my hair, especially when I also get to play with some sea salt spray and some tousling mousse. Give me a daring, dark lipstick and watch out world…or maybe IHOP or Snapchat. Whatever. *laugh* I’ve always been a bit into catching people off guard, such as dyeing my hair burgundy when I turned 18 or wearing acid wash jeans with light up tennis shoes while line dancing, but wow! I feel so edgy and like I finally found the look I’ve been trying to get all of my life. I must say though that I’m very thankful that things timed out right for my mom to come help, otherwise there’s a good chance it would have gone very badly and mad me mad, so I’d have just buzzed most of it off with pretty short hair on top. 🤣 Thankfully my guardian angel was working feverishly instead of drinking tea and wondering if I’d fall off the stool and crack my head open. Sometimes I think there’s a bet among the angels about which injury I’ll get next and to what extent. Anywho…*grin*
Next, decide which is the higher priority right now…getting my half sleeve tattoo or a Wii switch so I can get my groove on with a Just Dance subscription. I want that tattoo, but I’d really like to not have a muffin top with skinny bombshell jeans this Spring. In the meantime, I’ll read my book about a knitting group of vampires helping a fledgling witch take on a poltergeist and find a human murderer. Enjoy today, make decisions someday. 😉
Recently I became unable to move by myself. I became over fatigued while trying to do a little bit of housework, so after hanging laundry I laid back on the side of the bed, with my legs hanging down. My legs and ankles are my worst trigger areas, and my claim for disability strongly rested on my need to have my legs elevated to reduce pain, on top of the fatigue. And I knew I was getting worse. I’ve known since about October that my symptoms have progressed. I couldn’t bring myself to believe how far until I tried to stand up and couldn’t even try to lift my leg without screaming.
Thankfully L was still home, instead of working, and came when I called. At first it seemed like an annoying “my hip locked up” kind of thing, but whenever we worked to get my legs to move, it was either a case of excruciating pain or inability to move. He got my left leg bent and close to my body, and then cleverly freed his hands by leaning his body into my leg to hold it in place. With one hand under my back and the other holding my right leg, he managed to turn me on my side. Poor guy probably still has ringing in his ears from my scream, but it was his clever manipulation that enabled me to then begin to move my leg. He did socket manipulation to make sure I didn’t have anything wrong in my hip itself, plus it helped loosen the tightness from the inflammation that was all ready flaring up. After some work, we were able to get both legs bent without assistance and got me into a mostly standing position.
For days I had a lot of pain, obviously when walking, but also trying to sit or lay, and found that I could actually sleep or focus on something like reading (instead of the pain), if I lay in the fetal position on my inflamed side. My whole thigh and connected muscles ached, but when my inner thigh and really low back got intense, we realized the pain wasn’t responding to my meds because it was mostly likely from my nerve. I was pissed off at myself for not thinking that such a simple thing as laying back for a moment to recuperate to take the laundry basket back to the laundry room could cause a problem, especially when I have my legs elevated at least 80% of the time, if not more. When L went to work was the worst though. That’s when the dark thoughts about what could I have done if it happened now, since I didn’t take my phone with me while just hanging laundry up. If I’d tried to slide off the bed, not only would that be quite a way down with the deeper mattress that we have, but I probably would have struck my head on the cabinet across from my side of the bed (it’s a narrow passage around our bed, since it’s a small room with a king bed lol). I finally faced that my body would have left me trapped in place, which turns out to be a huge fear. I’ve always found Alzheimer’s terrifying since working in a Neuro office, because these poor patients were trapped, and then auditing medical records and reading about patients who showed mental activity during neuro testing but were otherwise in a coma, unconsciously made my fear worse.
I’ve been afraid of my illness progressing until I’m on permanent bedrest for a while now, with the memories of what I’d seen and read behind one of those closed doors in my mind. (If you’re a new reader, I often compare life experiences and traumas as doors in a hallway in the brain. Things I don’t like to face or have trouble with are behind closed doors, and I’ve worked for the past two years to open and work through everything in each room I open. Apparently I have more closed doors than I had realized though.) There is another Spoonie that I follow on WP and have watched interviews of on documentaries and he has progressed to this, despite the fact that his body was in WAY better shape at onset than mine has ever been, and it makes me cry every time I read his posts or watch his decline in subsequent interviews. So I’ve known the likelihood of someday reaching that stage and have been afraid, but have worked hard at not acknowledging my progression or my fear. Every so often I’d break down privately and after watching one documentary with me L finally learned about my fear. We both set it in our minds to a later time to deal with, I think, although I am “death positive”, as mortician Caitlin Doughty from Ask a Mortician, calls it. (Btw, she is phenomenal and I highly recommend at least watching her interviews and her “Confronting Your Death” YouTube episode, and checking out Order of the Good Death.) Anyway, as a way of being positive and leading the best life I can while I can, I made a kind of bucket list of experiences I want to share with L and “my created family – biological and emotional”. I’ve worked hard, especially with the help of one of my best friends, to accept using my wheelchair the next time I go to an event, like when L and I went to Branson last Fall. Yet, somehow I shoved the reality of my symptoms worsening behind a door. While laying in bed recovering the door opened, though.
I’ve always acknowledged that Fibro has stages and some super lucky people even get to go into permanent remission of their symptoms. Nobody acknowledges that there are last stages though and I began to wonder why is this different from other diseases? Cancer is one condition that is openly labeled with stages, among others. Are doctors afraid to label Fibro stages because it’s an invisible disease or because it has unknown origins? Maybe because each person has their own journey and my “good” day could be a horrible day for another Fibro sufferer? I became angry that my doctors all emphasize that a person can get hit by a car and die any day, so live each day to whatever my fullest is without worrying about my progression, but none acknowledge that I was progressing to the next stage. I also got really mad at myself for closing my fear and knowledge that I had all ready progressed behind a door. I was mad that I hadn’t been strong enough to actually face it or even admit it to myself, let alone others (and believe me, this is a super hard admission to write about). My “episode” scared those close to me and I think we all had to admit that things are worse than I had been admitting or allowing others to see.
I don’t feel that it’s fair for my doctors to refuse to acknowledge that I’ve entered a new phase or that it’s terrifying to have progressed. It doesn’t feel fair to just say “I have Fibro along with the commonly associated conditions”, when saying “Stage 3” or something like that could emphasize to “normal people” that I have more needs and worse symptoms than others. They’re used to having the stage given as a measure for their compassion, willingness to assist, or even their concern. Why don’t we have the right to have recognition? Why do we always have to fight for every aspect of this often disabling chronic disease to be recognized and acknowledged?
So, I decided that I can be angry and still live the good life while acknowledging my progression. I’m going to get a bold haircut (for me), dye my hair a dramatic color (full on ruby, here I come!), and I’m going to try to at least get the outline of my half sleeve tattoo done; all hopefully soon. In the meantime I’m making plans for how to get assistance when I’m alone and don’t have my phone in the room when I have something happen. I’ve made my decisions for how I want my death and body to be handled. I’ve started making plans for the few items that are important to me to be passed along to those I care about (just a small tip: talk to those you want to inherit something. See if they actually want it. Too often we leave behind things that the recipient has no desire to receive, so if it means enough to you to leave that item as an inheritance, talk to them first). I’ve even started to give some of “my treasures” to the inheritors, because I don’t want to add to L’s responsibilities even more, especially knowing that further progression without dying means he will have to take on more of a caregiver role. In the meantime I’m still setting goals for my good enough days, when I can do a little or sit guiding someone, such as making more product and getting my small business going again. That’s one of my biggest goals for this year. A friend has agreed to be my business helper whenever it works for us both and actually looks forward to it, so I’ll get a small piece of “me” back. What I can do in my daily life is limited, but I have the power to make the most out of every minute of them, no matter how tired I am or how much I hurt.
We all have the chance to leave a legacy, even if it’s just a small one. Mine is a tiny voice to raise awareness about this disease and fight for equality for us Spoonies. Like they say in my teen favorite musical Newsies, “Bryan Denton:
Sometimes all it takes is a voice, one voice that becomes a hundred, then a thousand, unless it’s silenced.” Mine is one of the voices joining the others to help get Fibromyalgia fully accepted and to get the needed research to help others. I may absolutely hate admitting how sick I’ve gotten, especially outside of my very small circle of people that I’m honest about it with, but I can be thankful that I have a way to be one of those voices; to be part of the change.
I made a decision on Black Friday. No matter what is going on with my help, and how much help I have to ask for in order to accomplish it, I’m going to end the hiatus and get back to making products to pamper and hopefully help others.
I have to admit, it’s overwhelming. The government has a lot of rules and I’ll have to redo every recipe that I have, if I want to continue any of my previous creations, since the guidelines have changed. Also, L and I had to have a real heart to heart discussion about the financial aspect. It’s no secret that I’ve always been in the red. I create products in an area that prefers to spend the same amount for a bulk package down at Walmart or the like. And my health isn’t well enough to try enticing customers at the Farmer’s Market when it’s in season. Not to mention that my time off meant that most of my ingredients expired, so I would need to replace anything I really wanted to focus on at the beginning. My therapist has been encouraging this for a while and after a lot of deliberation, we decided to invest in starting my crafting back up.
Thank goodness for online sales on Black Friday! I would have spent three times as much just to get my base ingredients replaced. It was still expensive, but it also helped me evaluate what I truly want to do with this little business of mine. I want to create. I want to be whimsical, gory, unpredictable, and sometimes a bit cheesy, nerdy, or girly. I want to make some products for kids to enjoy, so I got bubblegum and fruity scents for them. I got some *ahem* downright sexy scents (in my opinion at least) to help make more of a male and unisex friendly line. And I got some dessert and sweet fruit scents because I really want to play with making dessert-type soaps that you can just lose yourself in when you’ve had a tough day. A candlelit bath or shower, delicious scents swirling around you, and maybe your day will get just a bit better. I’ll continue to make my tongue-in-cheek monster line creations too, though, because they’re just plain fun.
I also got some micas and glitters that I can’t wait to experiment with! Unfortunately, during my hiatus suspension soap base was discontinued even with other wholesalers, so I get to learn how to suspend particles the harder way. Since it requires a lot of science and getting temperatures right, L got me a laser temperature gauge to hopefully help ease the learning curve a bit (candy thermometers just don’t cut it for me for some reason).
I decided to start small and be entirely selfish with creating just what I like to create with scents I prefer, instead of trying to get my previous decent selling products back up, since I never came out even anyway. This is going to be my creative platform instead of trying to be my money making supplement, so I realized I can do whatever I want. That was strangely a concept I never really had soak in before and it is so exciting now to get back to trying new things, and even revisiting a few others that I really liked or were really beneficial products in theory, like the goat’s milk lotion and products made with honey.
I have always struggled with asking for help, even as my illness progressed, but thankfully my therapist has finally gotten through my thick skull that it’s not a weakness or a limitation to be angry about. It just something different to accommodate new needs. I basically just needed to get over myself and my fierce desire to prove to myself that I could still do things I did before my illness became so prominent. Isn’t that a funny thought? Sometimes you have to get out of your own way in order to get where you need to go. 🙂 However, I’ve all ready set up some help and will ask for help from others if needed. I truly want to make my eclectic creations again.
I’ll have to wait until I get over whatever bug I’ll inevitably catch due to the holidays, but then I’ll slowly start to go through my supplies, dispose of outdated items and organize what’s left or newly purchased, and then redo recipes I want to play with again. And I need to change up my website. I’ve all ready changed my payment system back to PayPal, although I’ll be doing some test runs with that to make sure all goes well, and make some decisions on going more retail or keeping the site more informative, so I have the ability to work directly with the customer to make sure they get what they really want or need. I’m really not sure about having an impersonal online store where you just select how many you want of some item, click a few buttons, and move on. I kind of think the extra involvement and ability to answer questions or help guide customers is what sets me apart from the big boys.
So, look for some changes coming to the site (how long has that under construction sign been up on my site now? Lol), some possible grumbles about how stupid I think it is for some of the regulations and limitations the government imposes even on crafters instead of actual businesses, and hopefully with another month at least a few WIPs (work in progress, in case you’re not familiar with that one, which will probably be an acronym I’ll toss around a lot in later posts). *grin* And expect some shiny shinies. *laugh* My biggest inspiration while shopping were the metallic-like micas and glitters. Once I get that suspension technique down, I’ll be letting my girly side out to play, which doesn’t often happen.
No bath bombs though. I’ll let Lush dominate that area and worry about staining skin and bathtubs. *laugh* If you’d have some ideas nor product names you’d like to have me see if I can use, please don’t hesitate to comment or email me! I can always use more inspiration!
Anyway, that’s my happy little update. If you celebrate them, I wish you and yours a very Merry Christmas and a happy, and safe, New Year’s! 🙂
A lot has gone on since I last posted and I don’t think most would be of much help to another person, so I haven’t bothered sharing any, since I’ve always wanted this blog to inspire or help others. However, I learned a very valuable lesson in the past week.
L surprised me with an amazing trip when Branson, MO started their Old Time Christmas season, which I’ll write about and share amazing photos of later. We knew that my being around people and being active (there’s a special old time, craftsman type of theme park there, where they keep old talents like blowing glass and blacksmithing alive, plus I believe the award for the most Christmas lights in the world), would be hard on me. This was kind of my goodbye trip to going as a “normal” person, so to speak.
We’ve gone there off and on through the years since we honeymooned there, fifteen years ago. One can never predict the course of an illness though and mine is stealthily taking away my ability to walk much, even with my cane, so on my list of “before I’m wheelchair bound” bucket list I had down Branson. Since I’ve progressed so dramatically within the past 15 or so months, he secretly planned to fulfill one of my biggest hopes. We knew I’d catch a cold being around sick people, since for some reason as a society we do not believe in staying home when sick, and that it would be physically difficult on me, despite the luxury accommodations that he splurged for to help me. Shortly upon coming home though, as my body was gearing up to get really mad about the trip, we met our neighbor’s litter of accidental puppies.
They’re noisy, but they are the cutest puppies and so darn sweet underneath it all. We developed puppy fever and wanted to expand our family again, knowing that we will never try to adopt a human again, so the more fur the more love in our home. *smile* As I was partway through my after trip symptoms we fell for two puppies out of the group and decided to go for it.
We went through that whole new puppy craziness of buying tons of things to take care of them, since everything of Bo’s was donated when he passed, and real life set in. The little girl and boy had neither been truly housebroken, as we thought he had implied, so it was puppy pads, paper towels with Lysol, and blocking off the kitchen or crating, believing a few days and we could move to the next stage, like we did with Bo. These little ones have so little interaction that they have massive separation anxiety though, so I had to literally be in sight and usually within their reach or there would be crying. We tried the whole “ignore and they’ll cry themselves to sleep” technique, especially with crating for brief periods, but the noise! Instant migraine and when the boy would hit top pitch, somehow it made both elder cats toss their cookies immediately. Triple the fun!
Long story short I ended up living in the sectioned off kitchen, taking tiny naps when they would nap (but as every sick person knows, it takes forevvvver to fall asleep, so more than an hour was mind blowing), and becoming very hurt by their playful nips and puppy claws, plus not being able to relax in my “accommodation” spots, which are set up to minimize pain and help my body rest. For the first time ever I looked in the mirror in the bathroom (a bathtub makes a great playpen for pups, let me tell you, especially in a tiny bathroom) and I actually saw my illness begin to physically manifest. There are tons of supportive memes that Spoonies share of how we would look if our illnesses weren’t invisible, with a body covered in bruises, sores, etc. I saw two black eyes, skin that just looked…wrong, and bruises. My glands along my throat had swollen and I ended up coughing up some interesting stuff, while most of the rest of my body started shutting down until I was in such low-spoon usage that I didn’t change clothes for days and ended up laying on kitchen mats because my body couldn’t take sitting upright anymore. My veins are growing less prominent under the surface of my skin thankfully, but it was kind of creepy to see the bluish lines running along my entire body.
Add to it that housebreaking never caught on well, although I made a tiny dent, and the cats went into a tail spin of bad behaviors, including trying to beat the muzzles if a pup got close enough. To be fair, with the bite force these little babies have, I was scared of what would happen if one got hold of one of the cats, too. At least the cats swatted without front claws when the pups got in reach (done for medical reasons, not without considering their health and the research behind it, trust me).
It became a nightmare situation made all the harder because I spent nearly every minute with them, except when L kept himself up when he got home from work, to take care of them so that I could get undisturbed sleep. I fell in love with the wiggling bundles of wee and wild tongues. But the hard decision had to be made to either return them or find care while he worked and slept, because I was going to be hospitalized. The returning was a disaster within itself, even though it was less than a week later, and the only thing that tipped the scale was me actually showing an outsider just how sick I looked.
The worst is that the neighbor still hasn’t taken the litter where he said he was and every day they get put in their pen periodically, crying away with the parents, especially since it’s so dang cold. And if either of us are outside, the two remember who we are and want us, because they knew love for that little bit of time with us. Which makes it hard to stay strong, but being terrified of the alternative helps dampen it, admittedly.
So, there’s the back story to this change in perspective that I developed. When the war (puppy) zone got picked up, cats realized they could roam freely again and had access to Mom, and I went on bed rest, suddenly nothing ornery that the twins did, or the squabbling between the older and younger generations, bothered me. I’ve actually found myself laughing at the feisty antics of Zane stealing little things and taking them around the house to beat around (and try to shove under the oven like everything else lol). I separate squabbles, but I understand where they stem from and do it calmly without anyone getting in trouble. The “Trouble Twins” aren’t so bad when the perspective has been tweaked.
I’m hoping to cling to this lesson and learn to apply a change in my perception to that bucket list I’ve made. I still want to do as many things on there with L that I can before I’m permanently bed bound, but it’s not before I’m in a wheel chair. That’s just my pride and fear of considering myself “less than”, when it’ll actually enable me to continue trying to live my life to the fullest. I’m going to try to challenge my perspective on a lot of things and see what I can improve; in my life, in my character, and hopefully my relationships. Seeing the world through the eyes of a chronically ill person can be a little tinted, or jaded, so I’m hoping to do better about how those I care about perceive my actions and being a lot more understanding of how difficult it is for them to understand such a bizarre condition.
I once read and didn’t really grasp the saying until now: “Instead of asking why me, ask what can this teach me”.
A few hours ago, 20 years ago today, my daughter Sierra became an angel. Although there is no expiration date on grief, we’ve learned to be thankful to have a bit of Heaven in our home and in our hearts.
“There will be another angel
Around the throne tonight
Your love lives on inside of me,
And I will hold on tight
It’s not my place to question,
Only God knows why
I’m just jealous of the angels
Around the throne tonight”
Jealous of the Angels, Songwriters: Zachary N. Runquist / Jennifer Bostic / Jimmy Fortune / Barrett Yeretsian
When I became disabled at such a young age I was still at the point of life where I measured my value by my salary, my career position, my good impact and service to the community, and even my housekeeping skills in trying to balance being a working wife. I’m not sure if that would have ever changed if I hadn’t become disabled, but I’ve struggled a lot with self worth, because I didn’t change my criteria for value even when my life and abilities changed so dramatically. I’ve carried so much guilt for so long over things that are completely out of my control, all the way down to being unable to do housework or even change my clothes sometimes.
Instead of viewing my bath and body products as a creative outlet that also meant that I could help others, I measured it as a ruler for success. If I couldn’t have my career, then I should make a success out of a home-based business, especially one that allowed me to be creative. However, it has never been successful enough to even turn a profit (partially because I was always experimenting with new ingredients that were thought to be helpful for various ailments, or buying new scents to see if they might fit in, or whatever else caught my eye, so my supply purchasing kept me well in the red *laugh*), and I judged myself a failure.
I failed at keeping my health, at being the wife I expected to be, at becoming a mother, keeping house, cooking, and even making my own business at least break even. More health issues have been draining me, I’ve been on bedrest a lot lately, and we’ve changed up my treatment plan to see if the new plan will help improve things (3-4 months before we know…seriously. You tell someone who has no idea what tomorrow will be like that it’ll be 3-4 months before we know if this works; that’s an eternity! Silver lining time – I get to hope that things will improve around Christmas!). With everything I became extremely angry. I became mad that my illness has taken so much from me, that the adoption didn’t work out, that our basement flooded when we had a big storm and lost power for an extended time so our pump couldn’t get the water out, that I felt I couldn’t make any extended plans (even flexible ones) because I have that stupid mortality clock ticking in my head, and super angry that I felt like a waste of tax payer money that was just waiting to die. That’s the brutal truth.
Thankfully I saw my amazing disability therapist a couple of weeks ago and not only did she have my blog posts to be able to gauge my emotional state, but she really got to the heart of my angers. Fear. That mortality clock is ticking because I’m afraid of what awaits me when my condition worsens, but she pointed out that healthy people die every single day, so my clock isn’t any louder than even hers is. And I, and those close to me, have learned how to make accommodations for how my illness has changed my abilities, so we’ll just change a bit more for anything that comes my way. My greatest fear though, it turns out, is my lack of being able to contribute and be of service; having absolutely no value anymore. It’s going to be a long work-in-progress to change my definition of what makes me valuable, but being of service has always been my top priority, and she said something so unexpected and profound that I’m still reeling, honestly. She wanted to know what I’ve been doing for a creative outlet since I haven’t been able to make products, because being creative is a huge part of my therapy and massively beneficial for my mental health, and I had trouble explaining my twist on digital photography (my photography on Second Life), so I showed her my Flickr photostream.
I had just posted a series playing on the movie theme of Gidget©, plus pictures of my little SL family, a scene recreated from the latest version of A Star is Born©, and my random ones with learning how to experiment with a special lighting program and editing. She looked through them with this beautiful look of awe, as if she was in a museum, and asked me if I realized just how much I contributed with my photography. She said they were like paintings that were hung up for tons of people to see (since it’s a digital forum) and I get to evoke feelings in the viewers, just like regular artists do, such as nostalgia, joy, and amusement. I literally got teary eyed over the concept, since I could equate that to how it was when I competed with my poetry and had people thank me for what I wrote about.
She went on then about looking at the value of what I give to the others in my life and even in my blog; how I work to help or enrich lives, no matter what my illness is currently playing. She said I also need to work at seeing myself through the eyes of others and seeing the value that they place on me (yet another one that’ll take me awhile *grin*). I have felt a huge shift in my internal attitude and a big, nasty, pile of guilt has fallen off of my shoulders. I may not be able to contribute in the ways that I want to, or deemed that I should, but I’m developing a creative talent that has the ability to provide joy and comfort to others. I was so angry at what was taken away that I didn’t see this blessing that God had given me to replace the vacuum. I didn’t see that even with my old criteria for value, I have value. I may not volunteer or do big acts of service, but I can still contribute and be of service to God by helping others. It’s a huge honor to me to think that my fun little Gidget© photo shoot on SL is just as meaningful a work of art in a gallery or museum. It’s quite an honor to be disabled with a chronic invisible illness and find at least some of my value again.