Covid came to visit again and unlike round two, it really kicked my hiney. I suspect it’s because of a stronger exposure, since it made its way through our little family, but with so much unknown about the ability to contract this multiple times, who knows.
Although my KS doctors are still working with the vaccine roll out, MO isn’t, so when I have an online appointment with my fibro doctor on the 1st I’m hoping his staff can get me scheduled for the shot up here at St. Luke’s. It seems like I’m recovering, which is when my doctors most worry that I’m most likely to have a sudden, severe decline that requires hospitalization. Being the practical person that I am, I appreciate the honesty. Being scared that with my problems if I get hospitalized for anything I’m not coming back out…well, I kind of like the voice in my mind that fibs and says we’re getting through this just fine. Lol
The great part is during this I am literally in a fight with KS Medicare about them still believing I’m disabled and wanting an evaluation done in person in Topeka in a couple of weeks. I’ve talked to national, KS, and an assistant to the case worker for my KS DDS. All said it’d be cancelled and to wait for MO to contact me, since they’ll probably want to do their own investigation beyond the huge “paperwork reduction act” packet I filled out months back. On the 18th, two solid weeks later, I received a second notice of a new evaluation scheduled at the same place in Topeka. 🤦🏻♀️ One, if the paperwork has said “no expectation for significant improvement and will never work again” for over a decade, I think the government is wasting money on paying some doctor to evaluate me, then a committee to review, etc. Not to mention the cost behind all this paperwork! Two, KS hasn’t been paying for my disability for 6 months. A little late to be deciding if you’ll continue to pay me, IMO. Lol Politicians get gold toilet seats and the government pays people to harass permanently disabled people. I don’t usually get very political, but dude, why do we have room in the budget for this?! And a bit ironic to me that MO hasn’t had a problem other than when they would move my monthly payment to a different bank than I used for years. As the youngest would say…”Kind of sus to me.” Lol
So between Covid, planning the Handfasting (under 70 days!), court, and settling into our family rhythm, I know I’ve been quiet and wanted to post a bit of a heads up. However, I’ll end with a few cooler things though than the blah. 😁 One, the eldest got Captain of the Rugby Team! Sadly he only got to play once before we all crashed with the bug, but in a few weeks, we’re back to Saturday matches of young men beating the holy tarnation out of each other. 😂 Two, which was worrisome at the time but funny now, my fever got warm enough while sick that my Shamrock and glitter decorated fake nails began dropping off because I warmed the glue with my fever! We still haven’t found one rogue nail, which is disturbing lol, but they started popping like popcorn, even into the cat food when I scooped a bowl! 🤣 Lastly, although we’re having to make some modifications due to Covid cutting events out of our time frame, the Handfasting plans are coming along nicely. I think, in a way, the adaptations that are coming about are even better. It’s definitely not the original three mental images that we had, but it’s more cohesive and “us”. We had to cancel our engagement photo shoot and have had some issues with my dress, but being sick, and honestly a bit scared about it causing complications, has really helped to hone in on the things that really matter to us. And that’s how I want to close this little catch up post.
Life is hectic and the world feels like it’s in turmoil. Just don’t forget to take stock of the things that really matter to you. Celebrate any milestone you can, hug a loved one if you can and hold on long enough that it becomes a memory seared into your heart. Rejoice in having family/friend game night again and cherish the laughter. No matter how crazy it is and how much you’re struggling right now, you are loved. As someone who has fought suicidal ideation a lot before, I know it may be hard for some to believe and trust in it, but you are loved. And if you’re lucky enough to be in love, learn their love languages and wrap yourself in those beautiful moments to help during the bumpy moments. Don’t forget to pamper yourself in whatever way that suits you, either! A bubble bath, 5 minutes on the back deck without kids, crafting, or even gaming. You’ve had a rough year. Show yourself some love. 😊
I had to take a step away from most media and such while I dealt with some big life changes in this past year. If you’ve been following me for a while, then you know that I contracted Covid, survived despite the belief that my illness equaled no survival of contracted, and went through an intense few months of Home Health while recovering from Post Covid Syndrome (finally made official in some circles). I worked extremely hard to get part of my health back and ended Home Health better than I was pre-Covid due to the incredible Physical Therapists and intense independent PT. I became more functional than I had been in a couple of years, although I’m still disabled and face daily challenges, and continue some parts of my PT independently to this day.
While recovering I began to feel strongly that I had been given a second chance at life, especially since I was not supposed to survive and had actually improved to have a better quality of life. I had been preparing to die because it was inevitable that I would contract it, so I couldn’t continue letting life pass me by when I was given such a massive gift.
For many years I had been unhappy. It was a combination of things, but one part that we kept very private was that our marriage had hit hard times years prior and never recovered, although we tried. We honestly were better roommates and friends than as a couple, and he was a thoroughly amazing caregiver and provider. I have been accused of a lot of things over the past months, but I’ve always given him credit for helping me with my disability, being a much needed friend when things went badly with Kid’s adoption, and we were comfortable with one another. But we hadn’t been in love for a long time. I don’t feel that it’s appropriate to debate our thoughts and feelings from early on, prior to when things became a real struggle years ago, and I won’t go there, so I’ll give credit where it is due but be honest about the fact that the marriage failed a long time before I declared it. I honestly had waited for my illness to progress until I’d die and then Covid came along, so I waited for that to end my life and the marriage.
Instead, working so hard to recover gave me the strength to decide I was going to file for divorce and leave town, when it had just been something I had wanted to do for some time, but felt it was pointless because it seemed like my health was going to decline fast enough that marriage wasn’t a priority anymore. But I was lonely despite living in a house with my legal husband, aka roommate and friend, and I wasn’t going to ruin my second chance at a life by remaining unhappy.
During this time Fate intervened. A former fiancé from 19 years ago reached out to catch up and it was as if our friendship had picked right back up from the moment we parted (a sad miscommunication that I won’t get into). He was going through a divorce and we talked about my decision to file, and he explained all that he knew about the process, etc, and our friendship continued to strengthen. I could talk to someone that hadn’t been involved in my married life at all, had no stake in it, and could work through my thoughts and feelings without fear of judgement, while he also helped me change my way of looking at my disability as part of my life, but that it hadn’t changed ME. For the past several years I had felt like disability had to have changed me, because I didn’t feel like I was in a loving marriage anymore and felt that my health needs had ruined my chances of meeting my romantic and “life” needs. One of my best friends sent me the perfect pin one day that sums up my sudden realization when I was able to see myself in his description (of still being me, but just not in the right situation and having extra challenges in life).
It was time to fix my environment now that my mind and soul felt strong enough, even if it meant I’d have to go on Section 8 and get extra state assistance.
We had been texting and emailing throughout all of this, but decided that he would come from across the border to the house to game with me, since he wanted to see SL for himself and we had spent a lot of our relationship when we were young gaming, so it was the most perfect first hangout in person. During all of this I hadn’t gotten to the point that I was ready to tell my husband about everything, because I hadn’t figured out all of my plans yet and we had known for some time that things weren’t right, so it didn’t feel like I needed to bring that up. I was completely honest about rebuilding my friendship with J, we’ll call him, and I was upfront about the plans for Luke to drive down to come game with me (it is so much easier to learn the basics in person if you’re going to hang out with a seasoned SL user). There were no motives beyond having an awesome time reconnecting and gaming, and hanging out with someone that was willing to drive over an hour to come hang out in person, especially when L seldom felt like taking me to hang out with friends on my good days for years.
The moment that J parked, got out his laptop, and then started walking up the sidewalk, I had this sudden feeling unlike any other. It was this sudden knowledge that my life was about to change completely from this moment on. And when he looked up and we smiled, it was like I got hit by a lightning bolt at the same time that the sun came out after years of darkness. I didn’t pinpoint the other feeling until later, but it had hit me that I still loved him as much as the day he proposed. I just felt something slam into my chest and mind, and everything felt right in the world again, right in the middle of a pandemic.
It was a magical night of catching up on life events (he had 2 sons now!), our marriages, showing my scrapbooks, and gaming. Although we spent part of it catching up, it was as if we had just picked back up from where we ended. When L’s alarm to wake up and get ready for work went off I went and made his lunch, and was back to explaining SL while sitting beside J when L had finished getting ready and came out to get the last items before leaving for work. J stood and shook L’s hand when I introduced them, and L later told me that when he shook J’s hand he knew that this was the man who was going to marry his wife. I just thought it was an awkward moment, tried to make it as easy as possible on them both, and we went back to gaming when L waved that he would head out without needing me to see him off. So J and I continued to hang out until it got late enough that he really needed to start his drive home because he still had to work in the morning. And no, despite rumors, we did not have an affair.
After having such an incredible time and a lot of deep conversation with J, I knew I needed to end the marriage despite not having my next living arrangement established yet. On the way home from a dr’s appointment in July, after a very disagreeable time together, I told L that I was filing for divorce. He actually guessed it when I said we needed to talk. We spent a long time talking, which was seriously overdo, and he had avoided, but actively participated in finally. Although he hoped things could be saved, he since acknowledged that I had tried for years to get his help to save things and I just couldn’t anymore. A person gives up hope after trying for a long time and once they realize there is still life to be lived, but that it doesn’t include that marriage, I don’t think anything can save that marriage. Definitely not our marriage.
I needed a break from it all, so I left for a few days to hang out with J and old friends that I had lost due to everything, and it was amazing. I suddenly saw an opportunity to live somewhere where I wouldn’t be watched or ostracized; where I had access to public transportation and Uber instead of always relying on others, and could get something as basic as a meal delivered when I didn’t feel up to cooking. And I had friends around me ready and happy to have game night, or hang out, and happily went out of their way to spend time with me without making me feel like my it was a hardship to be my friend or come hang out. Plus I was in an environment where I could go hang out or go shopping at the Dollar Tree or Hobby Lobby without having to make it a planned affair or dependent on if someone else felt up to it on one of my good days. I had lived in a small town for so long I had forgotten that cities actually provide a lot of opportunities for a disabled person and allowed for a lot of independence, which I desperately needed. So I decided that I needed to move to a city, whether it be the city J lived in or another, but not another small town.
During this eye opening and magical time the bond between J and I snapped firmly into place, and I finally fully realized that I was still in love with him after all these years. My love of going to Branson to see the Christmas lights… J had proposed at the Christmas tree. Even he kept lights up on his apartment balcony, and had sought the joy and comfort of lights throughout all the years without realizing why. I could fill a blog post alone of things we had independently pursued or enjoyed over the years without realizing that it was based on something from our time together. We had literally spent our time apart doing things that connected us, even during the better times during each of our marriages. And sometime during this time away to hang out with my formerly lost friends and figuring out emotionally what I was going to do (which is a massively different step than the practical part where you tell someone you’re leaving and start researching the best options for the different life), J and I became bonded fully. We had obviously formed a deeper bond than realized, in light of all the coincidences of things we both did while apart that connected us, but it was as if we found HOME by being together and without really having some profound moment, we just knew that we had kept loving one another throughout marriages to another and would spend the rest of our lives still loving each other. There wasn’t much of a decision to make…we would be living together.
The first few months after the decision to live together had rocky moments. We developed a week on/off visitation routine around his week of split custody of his sons and I packed to move in with the three of them once the time was right. During this L and I finally talked about pretty much every subject and re-established that we are best as friends while there’s no way the marriage can be saved. Thankfully the divorce is very amicable and straight forward, although Covid caused our hearing to be canceled for the foreseeable future. I tried to make sure that he had a support system to be there for him with me leaving, which caused some situations that hurt me deeply but I truly want the best for him, even if it requires my sitting there quietly while false accusations are slung at me. I’m a very honest person though, so I can’t handle the lies very well and avoid those that believe them without even asking me about my feelings, while instead they focus on their religious beliefs or what they think happened or how they feel it should be handled.
Although Covid has the legal aspect of the divorce at a standstill, we are legally separated in the eyes of the state of KS. I officially moved last month, although I spent most of October living in MO with J anyway, and we’re preparing for our second, first Christmas together, but this time as a family, while we wait for the legal system to catch up and grant us each a divorce, so that we can someday get married to one another. One of those little glitches that ends up meaning a lot, because we look forward to even having the option to plan getting married.
It’s a big adjustment. I work nearly daily on my PT in some way, I work on establishing a relationship with each young man including helping with online based school, and we are learning how to mesh our lives together. The apartment is starting to become organized again, now that I’m almost done unpacking and sorting my part of the assets L and I agreed up (and wrote into our divorce agreement for the judge). We even recently got back from a small trip to Christmas in Branson; the first time I felt fulfilled because I was sharing it with the person that made Christmas so magical for me. And although we have challenges ahead and a lot of legal stuff to still go through, everyone says they’ve never heard me sound or look happier or more content. Our love languages and love needs compliment one another’s too, so we naturally nurture one another.
I don’t talk about religion often, but we (and those close to us) truly believe that we were Fated to come back together and that nineteen years ago wasn’t the right time for this stage of life – but it was the stage that created a bond that has remained and grows. We got back together when we needed one another and were ready for the intense bond that we have. I’d usually be super skeptical and rolling my eyes if I read or wrote this at any other point in life, but for the first time I have absolutely no doubts or questions (beyond when can we progress legally so that we can continue to progress naturally). I remember asking my mom after accepting L’s proposal “how do you know that this is really it and the right one?”. We just somehow know it’s right and we are meant to be, as corny or cliche as that sounds. I didn’t know that it could feel so natural.
Anyway, I had a lot to do and go through before I could honestly blog again, and figured that this was the right time to finally set the story straight. If Covid hadn’t interfered, my divorce would have been finalized a couple of weeks ago, so now I feel like I’m just waiting for the legal part to catch up and feel like we all ready went through the divorce when we separated our assets, talked so much, did the divorce paperwork, and officially live separately and are working on trying to retain the friendship we have had since we met when I was just 18. we have been friends my entire adult life and although we didn’t work in marriage, I hope that we can remain friends throughout everything, and hope that I helped him become the man he needs to be for the next female in his life. I never would have expected to have gone through so much in less than a year (and surprise, surprise, actually survived Covid and Post Covid twice despite my immune system!) and would never have believed I’d have J back in my life again, let alone have a family now (interesting side note – it can be split custody, but you love the children as fiercely as if they’re with you full time! And not surprisingly I still can love them just as strongly, just as quickly, as if they were my own or I had adopted them!). Plus, I can finally admit that the male alt I created in SL a few years back was based on J (although disguised physically), but I never admitted even to myself until after we had reconnected. My mind and heart kept showing me and I just didn’t catch on. He literally dressed up as Phantom for Halloween when he was young. You’d think my obsession with Phantom would have clued me in. Lol Buh me on so many counts. *grin*
And just to put it out in the universe and set things straight. I’m not able to teleport or do anything magical. It was literally impossible for me to have had an affair for a year. I barely had the chance to even leave the house and Hogwarts certainly hasn’t sought me out, nor do I have a Tardis or self driving anything to take me elsewhere. And in a small town with eyes always watching, there was no way I could have had an affair with someone coming over without that being heard about. So seriously, if you are one of the people that questions things, it’s a hard no-possible-way. We did not pursue a relationship until after I had all ready announced my intentions. And this is the last time I will ever clarify or explain this again. Accept me, my choices, and my new life, knowing that I made what I feel are the best choices for me, without judging or questioning me, please.
Anyway, I had to work through a lot before I could write about things, since I wanted to wait until the divorce was finalized. Now that I’m just waiting on the court to reschedule the hearing to complete the legal part, I felt it was okay to break my silence. I hope that the past months have treated you readers well, despite a crazy pandemic, and that you’ve been able to carve out a way to be happy throughout all of the craziness. And I can officially write “happy pampering” again, as I got to teach “Little Man” how to make some Star Wars soaps and I made soaps myself for the first time in almost two years. I hope you’ll stick around and welcome back “the real me” as I begin to blog again. 😁 Happy pampering! 😉
I am gobsmacked. Straight up, holy Scooby Snacks, you name it, shocked! It turns out that everything that happened in March, which caused this “massive progression”, was completely different than originally thought.
Back in early March it was believed that I contracted H1N1 with a very nasty and acute sinus infection following, which triggered a huge progression in my Fibromyalgia. Nope!
My awesome doctor started me on Tamiflu as a preventative the day I was exposed to H1. Yet I still presented with difficult flu symptoms, so it got chalked up to my immune system laughing at attempting preventative care. Since the week on Tamiflu, as of June 9th I finished my last pill in my fourth course of heavy duty antibiotics and still have the same weird symptoms that are like a sinus infection mixed with something weird. It turns out that the Tamiflu worked. While at the hospital, just days before the announcement of Covid, I actually contracted it. The presentation of symptoms were of a medium case of Covid that didn’t require hospitalization (I know, I’m amazed by this too!). Following this was the start of what has been anecdotally called “post Covid syndrome”.
It threw my health into a bigger tailspin than anyone could figure out and made my Fibro absolutely unrecognizable after my getting to the point of knowing every warning sign of what was about to happen, from having it for so long. And without my realizing it my symptoms got so bad that I believed I had progressed so rapidly that I was actually dying.
My amazing concierge doctor noticed the change in me and immediately ordered Home Health, since I had absolutely no quality of life anymore and was on bedrest almost around the clock. I had so many falls that one went so bad that I fell and hit my disability handle and hurt myself pretty badly. I had a body and symptoms that I couldn’t recognize or identify.
Home Health (HH from here on out) stepped up FAST. Within just a couple days I had both my nurse and PT Evaluators here to establish symptoms, goals, and all that good stuff. During the PT Eval he looked at me and said that he’s treated Fibro for many years and this wasn’t the presentation of a Fibro progression that he’s ever seen. It sounded more like the after affects of Covid than H1 or Fibro. Say what?!
That night, once the Fibro brain fog lifted as it usually does if it’s nighttime, I went down the research rabbit hole. I went to all my trusted sites from when I worked in Neurology first. They led to this, which led to that, and then to several epidemiologists, and finally to one epidemiologist who also focuses on ME/CFS (Fibro’s official initials nowadays). He started a list of post Covid symptoms that general population has been reporting, plus the extremely weird symptoms and changes that ME patients have been reporting, along with their “recovery” stories. Their Fibro had undergone dramatic changes that made it unpredictable to them too. And I had almost, if not all (it’s daytime, so happy brain fog time), of the post Covid symptoms.
This explained why super heavy hitting antibiotics couldn’t kick my symptoms for the first time. It explained how I could suddenly get bouts of difficulty breathing and get the barking cough back, and it suddenly disappear as fast as it came on. The increased falls, even more acute fatigue, unpredictable new symptoms that were attributed to Fibro, pain that my usual pain regiment can’t even take the edge off of, and even the massive swing of depression despite having finally gotten stable with the right antidepressants. We threw the proverbial kitchen sink at this and I couldn’t get better, so of course I thought this was it. So I just waited for someone to accidentally expose me to Covid and finish it off. No one expected that I’d survive it.
I survived. I have Fibromyalgia with a laundry list of other Invisible Disease comorbidities and I had a case that didn’t even get diagnosed as Covid until I was in the negative testing phase. And everything I have been suffering since St. Patrick’s Day fits absolutely perfectly with this syndrome of after effects.
HH is still a Godsend and although tiring, has all ready improved my life (not just with this whole revelation), and I’ll continue to learn how to manage, but from a massively different perspective and now with hope. We actually have long-term goals again. We’re celebrating. We’re learning how to adapt, especially since I may not get back to my cruddy pre-March “normal”. And we have to be super careful that I don’t get exposed again, since there is absolutely no idea if I can be reinfected or develop something else from exposure. We don’t even know at what point I technically stopped being contagious, but thank goodness I was all ready under quarantine for H1N1!
But a sickly gal with Invisible Diseases is a survivor. I’m so damn thankful and proud of that. My body pulled through on its own for the very first time. And who knows, maybe having Fibro helped fight it? “This is my territory to terrorize, so back off!” I know, absurd, but it makes me smile to think of my Fibro smack talking a pandemic trying to take me down. *grin*
So to the other Spoonies, have hope. I know very well how that seems impossible, but I’m proof that we can do this. And I’m here if you need to talk, have questions, or want to see if maybe your weird new symptoms match. And guess what? The government is finally starting to notice us and see that they need to help us. This pandemic is expected to slam a lot of people with Fibro and other post-viral Invisible Diseases. That makes us an even bigger portion of the population and they have to see us after this. We CAN survive and they WILL have to research how to help us. I’ve always believed that with every bad thing there’s at least a tiny silver lining. This horrible situation will finally bring us hope. Suicide and progression aren’t all that we face anymore. HOPE.
The Invisible Illness Awareness Day came this year while I’m having quite a struggle. If you feel inclined, please help spread awareness that there are invisible diseases that are barely understood and often disabling. The number one cause of death with most invisible diseases is suicide, because we seldom feel believed or understood, and we can become very broken when we lose the life that we knew.
In honor of spreading awareness, I’m going to be super vulnerable today and admit a few things. I am trying to accept that this is my new normal; although antibiotics got rid of the sinus infection, H1N1 combined with my Fibro to do a real number on my body. My level of illness has progressed again. In officially acknowledging this, I realize that I will have to make a decision on how to close out Georgia’s Pampering as a business. I’d like to keep the blog and hopefully still be able to provide useful information, but I’m no longer going to offer products that it is no longer healthy for me to try to make.
I’m also going to give in and get the forms done for my disability placard, so when I can manage to get out, I can do more by not being worn out from walking through a parking lot before I get there. I’m also going to use my standard wheelchair for when I leave the house, if it’s not a small outing that my cane can handle. I am now having too many falls and too much weakness to risk relying on my cane and hope. It’s silly, but those are two incredibly difficult decisions. Thankfully I all ready have a wheelchair from when I injured both ankles and feet, but unfortunately I can’t self propel myself for long without the fibro acting up in my arms, so we are looking into a motorized one. Unfortunately, because it’s for outdoor use and we do not have an accommodating house, the cost is out of pocket, so we are pursuing a few options of inquiry. Because we’ve made so many adjustments over the years to accommodate my indoor needs, if I want to have a little independence or enjoy time away from home, due to having a different kind of disabling illness, I don’t qualify for help. I guess I found another medical donut hole to fit into.
So, big changes are in my future as I stop being stupid and stubborn, and make some needed changes to accommodate the worsening of my symptoms. Maybe by being so brutally honest about what I’m giving up and dealing with at just 40, that’ll help someone else believe in these invisible illnesses, believe us when we say we’re sick, and maybe help someone understand a chronically ill friend just a bit better. I dream of a day when Awareness is just as vital as the MeToo campaign. Since it’s easier for a picture or pic with small message to get passed along, I’m going to share some down below. Please, please, please, feel free to share any and all, and help us raise Awareness for Invisible Diseases like Fibromyalgia/CFS.
Self help books and psychologists start a therapy course by changing how you think about your illness. It’s a challenge to make you stronger, adapt, and find other things in life that you are good at. Sure, that’s true, but stop telling us that we aren’t losing our lives. Acknowledge this and help teach us how to cope or heal from these losses! We are losing careers, relationships and friendships, hobbies, and basic abilities sometimes. Some of us lose the ability to feel safe outside of our home, because our immune systems are so bad that being around other people becomes literally risky. We lose the ability to enjoy date nights, feel good about ourselves, and sometimes we are paradoxically terrified of people seeing us at our worst…when we have extra cushions because just sitting hurts, we have braces or bandage wraps around joints, we smell like Bengay, we’re slowly dragging behind a walker, and sometimes we have to choose to use our energy on changing out of pajamas or spending a little while hanging out on the couch with our spouse. I’ve learned a lot of things during my journey and I lost a lot, too. So, no matter what therapy says, I’ll try to raise Awareness every May 12th that I make it to, and I’ll be honest that Fibromyalgia/CFS/Invisible Diseases all hurt from being so misunderstood.
Thank you for helping me spread Awareness and for being here during my journey. If you feel comfortable, please feel safe to share your journey in the comments. I’ll block any trolling. If you’re a Spoonie, you don’t have to keep your “I’m okay” mask on with me.
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. 🙂
*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.
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”.
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.