Chronic Illness · Musing · Self care

Spoon Beach

It’s gorgeous. Tempted to gather my portable craft junk and go do it on the beach. Also considering staying in bed where it already is because no sand and no sunblock are pleasant.

I’m pretty sure this is one of the most entitled/privileged problems I’ve ever had. The only reason I don’t loathe myself for it is how hard I live to please others and how much pain I’m in.

I’ve realized I’ve gaslit myself into thinking that everybody hurts most of the time and that mine is not special nor should I be allowed special accomodation for it. I also attribute some of my die hard “lets do all the things” attitude to society’s perception of the disabled.

I don’t want to be seen as diminished or a drain. Surely if there is time to crochet on the beach I can make more productive use of that time doing menial tasks at home.

You could go so far as to change “disabled” to “house wife” and it would still apply.

I’ve already talked myself out of going, but only because I’d need to get gas and pack a snack and… spoons…

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Musing · Rants · Self care

Insert rant here.

I think it must be human nature to want to bitch and moan.

I did.

I came here to do just that.

But truthfully, I can’t really complain…

Not to say that the degree of suffering of others invalidates my own experiences, that’s a wholly different debate.

I’ve been worse off, but my stress is at an all time high. I’m aware of and utilize stress release techniques. I blog, I have support networks, I even have a hobby.

It’s something to ponder.

Chronic Illness · Musing · Self care

Schooled

I learned the true meaning of self care today.

It’s not brushing your teeth or washing your face or treating yourself to something decadent. It’s the way you think about doing it.

Are you as dedicated to the task as you would be if you were doing it for someone else?

Or are you rushing through it to get to the next thing?

Literally, caring for your self the way you care for others you care about.

military family life · Musing

Moving Day!

Think Elsa’s Coronation day only way hotter and less Duke of Weasleton. But just as much upheaval.

But there was a gas leak? Fire trucks and police, 3 block radius perimeter and full gear, official B&E by the officials into our former home. We decided we had already overstayed our welcome anyway and fled the scene!

Skadoosh! We rolled out as they broke in. I found out later from the local milso page that it was a gas leak.

Gotta love the milso page. The one stop shop for news, rumors and gossip. Much easier to see my house pictured and surrounded by emergency personnel when it’s no longer home.

Home is an interesting concept. Most people can readily and easily define it. It’s where the heart is. It’s where you hang your hat. Hell, it’s even where you kick your boots off. 

Little harder to define home as a military family. Is home my hometown? Is home my children’s hometowns? Maybe it’s where I got married or where I launched my craft based business. Honestly, for the longest time, I thought it was where my other half was. Deployments and multiple month long training trips have taught me the errors of such sentimentalities.

Home is where the billing address says you are. Home is the zipcode the gas pump asks you for. Home is where Amazon Prime can readily locate you for sweet, sweet free shipping.

Is home really so shallow as a shipping/billing address?

Yes. Yes it is. So make the best of it. Be here, wherever it is. Right now. Don’t put it off. Don’t wait for tomorrow. Go to the museums. Play at the parks. Walk the dog. Eat at the diner, their biscuits and gravy is probably delicious but the potatoes have a 50-50 chance. 

The next duty station is around the corner. Make a friend. Make 5. One of them, if you’re lucky, will hang out with you on your last day. They’ll entertain your kids, or do some heavy lifting. The truly amazing ones bring coffee. They’ll prove you can make a true friend in this crazy gig, despite careers, busy schedules, schooling, age, branch of service and a variety of other odds and ends. Friends can be found anywhere. Keep them. Love them. Stay in touch. It’s worth it. 

So we are 2 and 1/2 hours from the new home. Stopped for the night. First PCS ever without a horrible sense of urgency for the drive. Or maybe it’s just the shortest drive. Either way we are spending 3 days to go 530 miles and it’s been downright pleasant. Storms and staggering heat indexes and humidity aside, the kids and animals have been solid, the hotels have been less than roachy and the gas is under 3 bucks a gallon. That’s a win in my book. Home is 40 hours away.

Musing

Updating via novella

It’s been awhile.

Moving, adminning on 4 pages, the business, and health stuff has sort of eaten all my time and gumption for such things. I’ve found it hard to focus my thoughts, though I’ve tried enough times. 

Even now I’m feeling a bit lost on where to start and go with this blog. Life is a giant jumble and my writing is reflective of such. I feel bad subjecting others to it. 

Health stuff. It’s not Lupus! Thank Odin. I feel like a jerk for being so happy about that as I’ve made so many friends with Lupus lately. 

Turns out the meds I was on were producing a number of symptoms. Malar rash, joint swelling, sensitivity to light, headaches, crippling fatigue, anxiety, depression, hair loss, difficulty breathing and swallowing. It was horrible. On top of which, I had severe intestinal issues, constant tinnitus, racing heartbeat, visual disturbances, muscle spasms, ulcers and a near manic insomnia. 

 A trip to the ER later we determined I have IBS, ulcers, possible celiac disease and should avoid meds for fibromyalgia due to my likelihood of developing all the adverse side effects and nsaids due to my ulcers. I already knew to avoid dairy, msg and processed meat but now I am also avoiding gluten, anything fried, non lean meat, meat in general really. Sugar stopped tasting good along the way somewhere and alcohol has really bad side effects too. Swelling, rash, joint pain etc.

So now I’m one of those teetotaling, vegan, gluten free types: ordering coconut milk quad shot lattes at my locally owned coffee house. 

I’ve lost 15 pounds and I don’t feel like I’m dying a little more each day. My fatigue is gone unless I’m in a lot of pain. When I’m in a lot of pain, I meditate, do yoga and try to think happy thoughts because that’s pretty much all I’ve got left now. 

I’ve accepted this is it. I’m okay with that, not because others have it worse or because some deity is testing my mettle, but because I am making the best of this life, even if it hurts. It’s mine and I cherish what time I have here with those I care for. 

I’m trying to have the best possible attitude about it. I’m trying to share my abilities with others and ease suffering anywhere I can. I’m trying to raise empathic, respectful little humans with healthy backbones who won’t sit down and shut up when they see the injustices our world is plagued by. 

We are moving. I’ve packed much of the house and just scheduled the final walk through. The utilities are scheduled for shut off and a basic timeline for things to be done has been organized. I feel like I’ve got an incredible handle on things, considering all the other stuff happening. 

My new year’s resolutions involved yoga and random gifts and kind gestures to a cross section of people in my life. I planned to do 6. I’ve delivered 2 so far and a third is half finished. Not bad for all the other stuff on my plate. 

I’m on an etsy like page for crafters with chronic illness. I haven’t invested enough time on it to make it worthwhile yet. I need to work on that and launch on etsy too. There’s a toy store in the new area we’re moving to called Monkey’s Uncle. I am taking it as a sign of good things to come.  

I’ve been wonderfully productive and taking great steps in the right direction but for just now my neck is a hot mess and hurts horrifically. I’ve stretched it over a rolled towel and iced it. Now I’m using my 10s unit and blogging for distraction. Hopefully I can go back to kicking butt a bit later. 

Ciao

Musing

Decisions

I still haven’t decided if this is for me or the audience, if there’s an audience, sorry. 

The medical standard in my country is utter garbage. I’m not sure if it’s better elsewhere but here I can’t schedule an appointment for Tuesday until the Monday before. Today is Friday but they can’t schedule a mere 96 hours ahead. Even the veterinarian was able to pencil me in for June. My cat and dog have better providers than my children and I do. Seriously? Who plans this nonsense. At least my animals are covered. 

So I may have mentioned we are moving. I cleared book cases from a corner of the front room and replaced them with stacks of boxes. The packed bits are growing and spreading towards the rest of the house. I take down decorations and such as I radiate out from the corner of packed. It’s like watching a timelapse of someone painting a picture in reverse. 3 boxes were packed and a curtain rod came down today. I have so much more house to manage and just over a month. Can you say panic? Also it’s just me. I’m cut out for this work, meticulous, practiced and just ocd enough to almost enjoy boxing up an entire life for 4 people.

So that medical stuff. I almost feel like I should blog it out from the beginning. Again, audience, I’m sorry.

Rough and tumble childhood. Tom boy, fort building, river roaming, tree and rock climbing extraordinaire. A walking talking scraped up bruise. Those were the days! Couple of car accidents (car v. car and car v. bike) later and I make it to my teens in one piece. Huzzah! Que high school. Only I wasn’t like the other kids. Migraines, multiple ovarian cysts and some specialists later we find out I am hyper mobile, suffering whiplash induced migraines, prone to cysts, IBS, atopic dermatitis, follicular eczema, fibromyalgia and prone to joint dislocations. Because teen angst wasn’t already lame.

Fast forward 10 years. Lots of swimming and lifestyle changes later we are down to just hypermobile with the occasional fm flare. 

Fast forward 5 years, welcome to 30s. Fibro flares are never ending, started as an overuse injury, developed into nerve issues, some imaging later they find bone spurs and herniated discs in my c spine. Nerve conduction studies show cubital tunnel syndrome, ulnar nerve entrapment and impingement plus my ulnar and radial nerves merge where theg should veer apart. Woo, neuropathy. 1 failed occipital nerve block and a lot of failed meds later I’ve developed hypersomnia on top of insomnia. I still have the overuse pain. I have nerve pain. My joints are breaking down from the inside out due to instability. My hands and feet swell randomly. I’m presenting with a malar rash and I’ve pursued the advice of numerous specialists. 

Blood work is all normal. No one wants to operate since I respond poorly to external stimuli and have inverse or extreme responses to medication. I’m a walking talking malpractice suit waiting to happen and they know I know. 

I’ve been going to physical therapy for a year and a half now. There’s literally nothing left. 

Yoga, diet, hobbies and caffeine are all that’s keeping me afloat. I’ve noticed a new sort of take on life recently. I’m trying for calm, paced and ready with a kind word for everyone on my path.  I’d like to think I’m pretty damned sage for my relatively short time here. 

Ironically, it’s hardest to turn that keen wit and observation on myself. It’s difficult to be kind and accepting of me. After all, I’m broken and then some. All my wisdom sounds cliche and tired.  My advice is contrived at best. I simply cannot convince myself or take any of my great advice. I wish I could. Stress literally translates into pain but I just can’t turn it off.

Musing

That’s Not My Specialty

Vexation atop frustration layered over  nihilism perhaps?

I used to care a lot. Certain things I still do. 

But I’ve got a bad case of the “fuck its.”

Where’s the beginning of my descent into medical mishaps? 

The easier answer might be, which one?

This one involves a metric shit ton of referrals. Also, pardon my goddamned French. Or don’t. Whatever.

Current stuff is easier to remember, thanks neurontin. 

The pain management doc wanted me to see a chiropractor and a rheumatologist. The rheumatologist ordered labs but is sure I’m fine except for what presents as a possible malar rash so now I need to see a dermatologist for rosacea?! The physical therapist is concerned by me seeing the chiropractor. She thinks it’s too high impact. This is what I’ve been saying for 16 fucking months. The pain management doc refuses to do trigger point injections, acupuncture or dry needling because sometimes these flare my fibromyalgia. Every damned thing from humidity to strong scents flare me up. My primary care doc won’t see me for things any other provider is seeing me for and since she’s referred everything out, having her on my medical team is tedious and redundant. 

It’s a big circle jerk and I’m the only one getting fucked. 

I could be having a crisis of faith. Lamenting why me? I could make myself a nuisance until my primary care doc looks at the whole affair and makes a qualified decision. I could demand referrals back to civilian docs and then take all the drugs they convince you to take instead of healing what’s wrong. I could probably do a lot of things. 

So far I’m just doing what they tell me. I’m not outraged anymore. I’m not hopeful anymore. I’m just sort of here. Here is sufficient. Here isn’t going anywhere. Here isn’t making any waves. It is what it is. If I ever thought I knew what ‘it’ was, I was a bloody liar. There is no rhyme or reason. There’s just a lot of tedium, even with the ups and downs. This is just life. I’m not sure why. There doesn’t need to be a why, a where or a what. That lesson in high school lit only ever sounded good to the youthful and hope filled, those who think they’ll burn hot and bright and fast. 

I work at being mindful, eating healthy, being less wasteful, but I don’t hope to save the world that way. I don’t even hope to save myself. Who wants saving? Who needs saving? Being broken is the new trend but implies all the broken things can be fixed, upgraded or replaced. There’s no referral or prescription to fill for entropy. Things break. There it is.

 Move to the next play thing, be the next big thing or just float until the end. I think I’m floating but it doesn’t matter. There’s a sort of cold calmness when nothing matters. Things hurt less. The happy feels are less felt too. Somewhere that makes me mourn for something I can’t remember losing but I’m sure I must have lost. 

It is what it is. I don’t know what it is, as that’s not my specialty.