Thursday, December 21, 2017

The 'fun' of panic attacks at 6 in the morning.

I heard my alarm go off at 6am, as it does every morning, reminding me to get up and eat something. This is a standard part of my day, and goes off after my 5:30am alarm which gently reminds me to take my morning medications. However, this morning I heard would might have been either hysterical laughter or desperate sobbing from the next room, which is my mother's bedroom.

I rose, stumbling into the hall and listened at the door, unsure of exactly what to do for a moment, then segued into my restroom to pee instead, and attempt to gather and process my thoughts. I heard Mom's pleasant upbeat voice moving toward the kitchen, witch further compounded my confusion and anxiety into full blown panic. If something was wrong, was it with me, or with her? Was I hallucinating? Has my Holiday Anxiety switched over to full-blown psychosis?

No, at least, not just yet. Mom was in the kitchen preparing her breakfast when I stumbled in and asked in a jumbled up way, what exactly I had been hearing, explaining that it might have been hysterical crying or laughter, but based on her current emotional cues seemed to be neither?

It was a Soprano, singing a French version of a Christmas Hymn, via our local classical music station, which is Mom's choice of wake-up alarm. It was certainly alarming to me at least. With a brief back and forth explaining the main difference in the French version of the Hymn versus the more common to hear in America, it was made clear, the desperate sobbing or hysterical laughter, was song, muffled through the wall, variable by musical choice and passion, rather than pain, despair, or a really good joke on Facebook at 6am.

I was not yet relieved. I explained my concern, given that Mom has been fighting both a kidney infection, and the infection known as cellulitis over the past week or so, my concern was severe, and was she actually OKAY? She assured me that she was, and kindly helped me to prepare breakfast (cottage cheese, with fruit for me, and usually half a Cost-co muffin for each of us).

Last night Mom was inspired to bake, and she made some little muffins about 1/4 the size of the generous serving of a Costco muffin, so we had two of these each to begin, and ended up going back for two more apiece. She made something from one of her collection of cookbooks, that had the texture roughly, of a corn muffin (like corn bread but as a muffin) but more moist, and with bits of fruit inside. These had dried cranberries substituted for currants, and mango marmalade, substituted for standard marmalade. They were good, somewhat saltier than expected, falling somewhere between sweet and savory in the flavor profile, but very definitely good.

Mom did ask for feedback last night, and I shared mine as we sat and ate. I think soaking the cranberries in a juice would help plump them up for future baking, and I felt that at the level of savory flavor and texture, they could do well with cheese, or cheese and little bits of ham.


My response to panic is to assess the situation, verbally dissect it (well past the point of death), and then fall apart and apologize. I do well in crises, honestly. I can hold it together and assess, direct, take (or relent) control and make sure the situation is properly corrected/diverted/etc, but I fall apart after, and it's not pretty.

My early morning experience today ended with my literally crying into a muffin, apologizing (repeatedly) for being unable to stop speaking. I also helpfully offered to cry for Mom since clearly that was all I was capable of doing, and was there anything I could help her grieve with?

This could be funny (odd, interesting to study) if this weren't what I experience with EVERY DAMNED Panic Attack.

I'm pretty sure Osaka and my mother have the patience of Saints.

Good morning to you all. I'm hiding in my room with my returned migraine until quite possibly Christmas morning.

Thursday, November 30, 2017

Some things.

Hello all!

I am slowly going through and attempting to recover/replace links that I had been using photobucket for. Some images I'm hosting through Google, and some may be hosted through Instagram. I haven't worked out if there is a way to share directly from there to here yet, but I'm looking into it.

I am recovered mostly from the upper respiratory ick, and am on my way to feeling more normal (for me at least). I had a follow up with my primary physician on Monday and was healthy enough at that point to receive a flu shot, so yay! I prefer to try and get mine around September but I've been too consistently ill.

I'm actually using my laptop today, because accessing images is fiddly on my phone, and I do have all my photos backed up on my external harddrive, so it's just a matter of finding them in my organizational nightmare, and uploading, replacing links.

Photobucket is holding my account(s) hostage as everyone else, but I've been able to sign in and look at what the links are so I will be screengrabbing all of that so I have a better idea of how to fix at least the last year's worth of broken images.

If I'm feeling ambitious I may go all the way back and re-upload, but that's like over a decade of MUCH MORE active posts and not everything was hosted through photobucket so, we'll play that by ear.

~~

My Thanksgiving was blessedly drama-free (or at least, lower than expected levels) so that was awesome. I hope that everyone else also had a great holiday!

Saturday, November 18, 2017

I'm not entirely dead.

My mobile settings have gone off-kilter, specifically with my web browser. There was an update and a bunch of customizable settings were removed or replaced, and I'm trying to figure out which.

In updating things, I've been sick off and on since at least July. A couple of kidney stones, the diverticulosis diagnosis, 2 modified diets for a month each, a skin infection, innumerable migraines, and currently an upper respiratory infection that has me concerned.

I saw my doctor yesterday and we determined it had the potential to become pneumonia, so I'm on heavy duty antibiotics, prednisone for duration, and a follow up appointment on Nov 27th.

We discussed potentially re-upping my pneumonia vaccine, as well as a now overdue flu shot if I am healthy enough when I see him next.

I have mostly been completely offline. I have Instagram but I've been so utterly and completely dead from illness and fatigue that I have not been online at any time longer than a couple of minutes.

I hope you're all doing well.

Sunday, August 27, 2017

New Diagnosis

I went to the ER last weekend, Friday night, and they kept me through midday Sunday. I have another (this would be the 8th I'm aware of in 2 years) kidney stone, but they were more concerned with what turned out to be Diverticulosis. After some research it seems to potentially answer why so many frequent kisney stones from an otherwise healthy kidney. 

Apparently other organs throwing a fit (including but not limited to kidneys throwing stones) is actually very common with onset of Diverticulosis. 

Also it is unusual but not unheard of in people as young as me. I just turned 34 mid July. I don't know if it's a common comorbid condition with EDS and POTS, but I would be surprised to learn otherwise. 

The joy of autoimmune diseases is that they like to trigger each other in a seemingly never ending chain of pain and medical confusion.

Wednesday, August 16, 2017

Kidney trouble?

Hmm. So I think I may have an ER visit in the next day or two. My left kidney is inflamed (again) and it threw a stone, which I've already passed on July 24th. Today is August 16th and I've had visible surface bruising (confirmed by Faythe and Mom) for 2 days over that kidney and next to my spine.

I brought up my continuing pain at my regular Dr visit about a week and a half ago. My doctor prescribed a very limited script of Norco for the 10/10 pain days, and I've actually had to take it two or three times THIS WEEK which is pretty unheard of for me. I have a ridiculously high pain tolerance and I've been debating the pros and cons of an ER visit for at least 5 days now. I'm trying to hold out until Friday. If it gets better then I will follow up with Dr and maybe ask for bloodwork. If it doesn't,  it's probably an emergency.

I always feel like I'm over reacting about my pain or health even though if I am even considering an ER visit it is 100% of the time something serious, and often far more serious than I had guessed, probably because I put it off.

So.. I guess if you pray, pray it's not a kidney infection or anything that is likely to kill me. This is part of why I fall off the grid so often. I'm sorry.

I miss you guys and hope to catch up with y'all soon. 

Tuesday, August 15, 2017

Time is perplexing.

 I never mean to fall off radar. Planned breaks from internet or other formats are announced ahead of time if and when thry are intentional. 

I had been switched from Ritalin to Concerta for treating ADHD, but the Concerta made me lethargic and didn't help with focus. Combining that with increased difficulty breathing, erratic body temperature, and erratic changes in blood pressure, it was too dangerous to continue. So I've been swapped again but I don't know the name of the new medication. I started a week ago tomorrow, I believe. 

I don't remember much since my early birthday party which was also on the first day of Concerta. I've missed the fall deadline for school, so I'll be attempting to iron out details for resuming in spring, health allowing. 

If I can figure out how, I will share pics from Instagram. I'm sure there is a way but I don't have the spoons to figure it out just now.

Monday, July 10, 2017

Med Change July 8th

 I have been painfully absent for I'm not sure how long. I think my doctor started me on the Ritalin about 3 months ago and it helped me to focus for school but it also ramped up my anxiety and the adjustment period where the person is less hyper reactive after a little while just never came. 

I didn't realize the severity of it until I started the new ADHD medication Saturday. A friend hosted a small and absolutely wonderful birthday party and present me with an amazing customized gift and it was all really great and felt low key despite excitement and sugar from cupcakes and uncooperative weather. I told her towards the end of the party that I was on the first day of the new medication and had been a bit anxious but didn't want to ruin our carefully coordinated plans, and she went way above and beyond what I had expected so my calm acceptance and real visible gratitude was in stark contrast to how I've been reacting to surprises for YEARS. 

This was also in drastic contrast to July 4th, when I met youngest sibling's fiance in what should have been a safe neutral place for me (the home I share with my mother), where I was keyed up and anxious and aggressively reactive which I've been on a sliding scale to UH-OH, since starting the Ritalin. I like future brother in law from what I gleaned and I had an embarrassing painful meltdown and lashed out at EVERYONE present before silently hiding in my room. 

I asked youngest sibling for a current email and carefully drafted an apology to her and him, and apologized profusely to my mother and other younger sister who were both present.

New med is Concerts, which is a gentler extended release medication and it's like day and night. I wrote some notes up day 1 between carefully preparing last minute things for the party, and I'm stunned. I remember this more than lithium, and if I was worse on lithium I'm ashamed, and thankful that I have any friends left at all. 

I may put some of my notes to my doctor about day 1 impressions below. 

~~
First day on the Concerta. Immediate thoughts. More gentle onset. Instead of waking vaguely conscious and immediately shifting to AWAKE and more than slightly anxious, I have had a gradual shift from awake? ..morning fog. Oh, awake. Reasonable list of tasks. Pondering tasks. No immediate onset of frantic anxiety screaming that we must do ALL the things and right this moment.

 Still able to focus minus the frantic anxiety of "oh crap so much to do, I can't do these things. *OVERWHELMED*"

Still very much aware of what needs doing. And actively working on it without the overwhelming suicidal pressure of MUST FOLLOW THROUGH ON EVERYTHING WAY BEFORE SELF IMPOSED DEADLINE. 

I hope this med stays at this level of helpful focus without triggering my flight or fight response like I was having. 

Especially notable that I am not apathetic, just reasonably calm.

This morning I have showered, had breakfast, done some low key prep for things we are taking to the party, emailed (my doctor) about potential  interactions, updated my medication list including further details on each medication  (exact dosage and chemical name and more accurate dosing timeframe). 

I will be helping frost cupcakes and looking further into disability application prep before the party this afternoon. I have been more quietly, **non-aggressively productive in the 3 or so hours of today than the last month. 

**Important note. I was productive but INCREDIBLY aggressive on Ritalin. I'll further note changes in behavior as noticed.

Doesn't feel intense like the Ritalin often did after eating. Passage of time feels a bit slow but that's kind of a relief after feeling like running full throttle for months. I'll need to be careful with time management as I'm less aware of time passing today than say this time last week.
~~

I still need to figure out a new photo hosting option because Photobucket has pissed the bed, but I'm using Instagram and Google images, so I may be able to do something with that. I am pretty sure I have a Flickr but I don't know how to use it and the set up is awkward fot me to look at and navigate. 

Oh the awesome customized gift was an American Girl as boy with green eyes and either black or very dark brown hair. I've been calling him Malibu Rory. 

Faythe has been looking for free source patterns so we can make him some things but he has some cute sailboat trousers so priority is probably a t-shirt or the like that.

Andi also gave me some lovely bits for my SD dolls, but apparently I didn't take a photo. I'll do so later today I think. 

Sunday, July 2, 2017

All the things.

Right, so quite a lot has happened since my last post. I don't know how to do real bullet points but here goes:

*Finished Geology with a high B

*Academic probation for failing online courses (contestable, which I plan to citing medical complications

*kidney stone

*kidney AND gall stone for Faythe

*Faythe has been accidental hostage staying with Mom and me, as we negotiate the various programs open to her and sort out surgery to remove gall bladder (necessary)

*Logan and his wife bought a house (they moved in Monday)

*I've been spending a couple of days each week there (apt) helping pack small stuff and playing Breath of the Wild on the switch

*I've gained notable weight

*Diet has been erratic since school ended, compounded my Faythe's medically restricted diet.

*SEVERAL OF MY MEDS CAN CAUSE WEIGHT GAIN. ALL ARE MEDICALLY NECESSARY.

*My primary physician agrees that I should apply for disability.

*I don't WANT to be on disability but I literally can not function at a "normal" level even with medical intervention

*Non-stop migraine. Literally always there, but less killing me than last year when I was doing work and school full time.

*My (adult) niece Ashley has secured a job in Chicago and we are all incredibly proud of her. She is having a small going away party today which I will be attending. She starts I think on July 5th, maybe 10th.

*I'm having a small doll folks birthday party Sat July 8th, hosted by a local friend.

*I'm hoping to find enough spoons to finish at least one of Robbie's Marvel t-shirts by then for photos.

*Faythe told me about a cake recipe she learned that will make it possible for her to have cake sans frosting and we are doing a test run today. If they work we will take thrm to Ashley's party. If not, Mom has a backup plan, coconut cake, gluten free.

*I am in a constant state of wildly swinging from depressed, crippled with pain, just functional enough to do things, and DRIVE TO DO THINGS with no spoons.

I have literally tried to write ANY kind of post for a month now. I'm sorry.

I turn 34 on July 14th. I need to get in gear to argue with the school so that I can continue education but Faythe's health has reasonably taken priority. I'm concerned but not freaking out.

Sunday, April 16, 2017

Happy Easter to those who celebrate it.

 First this:


Then a summary of my week.

Wednesday I finally realized the back pain that had been amping up was definitely left kidney (again). I asked Mom for visual confirmation of what I already knew was there and then politely requested that we make a visit to th ER. I felt bad because Mom was already tired and in pain from verboten back problem but it was a necessary visit whether either of us wanted it or not.

If you have me on Facebook you may have seen the play by play as Mom and I tag-teamed updates. Since many of you are not on my Facebook I will try to summarize. Wednesday evening we went over to a nearer ER than the one I went to last time. We expected a quick in and out sincecqe knew what the problem was and just needed confirmation. A CT scan confirmed at least one stone kicking about in left kidney in no hurry to escape. Urinalysis and bloodwork suggest I passed a small stone recently (within 24 hours) which would account for the inflamation and pain.

Also visible on the CT scan was an unexplained pocket of air in the abdomen. The doctors were concerned about this and had me do a contrast CT scan to try to find where the air was leaking from. They briefly mentioned possibly ending surgery immediately without further context. After contrast CT confirmed the air pocket but no leak, they told me they wanted to admit me to hospital and would discuss whether surgery was necessary. 12 hours without fluids or food later I spoke to the surgeon. He told me that surgery would entail cutting me from breastbone to pubic bone with no guarantee of finding anything, and that since CT did not show where the leak was he was disinclined to cut me open on the off chance he could find something and then hope so healed afterwards. He and the main doctor went back and forth about it for a few hours before he spoke to me.

They kept me a little longer because they didn't agree on whether I needed to stay for observation but finally Thursday afternoon I was released with antibiotics and some hydrocodone for when that stone breaks free.

I feel weak as a newborn kitten, partly from the 12 hour fast, partly from the radioactive contrast stuff ingested and via IV, and mainly because I couldn't sleep at all while there.

Tuesday, April 11, 2017

Falling asleep in public.

 I keep doing off, at school mid task. We had storm after storm blow through last night and with the severe weather alarm going off *EVERY* *SINGLE* *HOUR* I managed less than an hour of sleep. If I wasn't already a day behind in notes I'd have stsyed home and hoped for sleep. As it is my eyes are drying out from my contacts and I'm wishing I was home in bed. 

Monday, April 10, 2017

I don't have words.

I looked for an app to post to dreamwidth from my phone like I've been doing with lj and blogger, but no such app seems to exist. I will continue to crosspost my entries for awhile but will ve switching mainly to DW over time. Same screen name.

Current mood is this:


 Between people being assaulted and dragged off airplanes, airstrikes in Syria, gay concentration camps in Russia, I'm numb. I can't process any of it. I'm logically terrified and functionally shut down. 404 error, no Rory found.

Thursday, April 6, 2017

Notes to my doctor

I keep a memo with dates (And sometimes times) running to record things of interest regarding my health so I can remember to discuss them. Today's notes so far as of 6:30am local time:

"Woke up non-functional. Physically can not do things I can generally do. Migraine present, medicated, back scream with pain, joints spontaneously dislocating. I keep crying, I'm so frustrated. Actual tears. I haven't been capable of physical tears when crying in years.

I'm at a loss and feel defeated. What caused this? Yesterday I did a couple loads of laundry, minor tidying in my room, some more unpacking and careful shifting of things. I've thrown out my back. This shouldn't even be an issue.

I WANT to go to class but physically can not. It took 20 minutes to carefully get out of bed. I was limping and trying not to cry while in motion. I can't lift a pillow, let alone my backpack. I'm angry, tired, feel defeated over this.

I'm already freaking out about getting complete notes between several classmates. I have so much that needs doing and much of it is standard day to day stuff and I JUST can't today.
4/6/2017"

I am tired, sore, angry. I don't have more eloquent words.

If there are typos I fix that before my appointments.

Saturday, April 1, 2017

I'm technically alive.

I have been super bad about checking in. No kidney stones or other new and upsetting health things just a doozy of a migraine that lasted a week at 10/10 on pain scale coupled with sensory overload on all fronts. I have been incommunicado with every one except my mother intermittently because she lives with me and can gently prod me until I respond.

I don't feel well. Nothing in particular is wrong. Geology is going well. I have taken a bunch of pictures of random things and shared commented sporadically on Facebook, LiveJournal, and via text. Mostly I've been recovering physically from my trip to Tennessee and back.

Got to see BFF and her son, and also her Mom, who is pretty awesome. My Mom got to meet her, and also BFF's brother on our way through Nashville as we had a meal together to catch up and enjoy good food. I probably will continue to be less active. I have a laundry list of things to discuss with my primary when I see him on the 17th.

Wednesday, March 29, 2017

Migraines and stormy weather.

I woke at midnight with an intensified crippling migraine. I've been fighting this at varying intensities since Sunday.
The pain presented as such that I wouldn't handle light or sound at midnight in a darkened house. I could sort of grope through the dark with one eye covered but I've got migraine blindness going where great swathes of my vision are impaired. So, I pulled my sleep mask askance to cover my left eye (I drew this backwards) like so.


Of course there have been massive storms rolling through so Mom's safety alert radio went off  half dozen times between midnight and 2am. Because safety. The storm passed mostly to the North and South of us. That safety weather radio is a screamer and feels like a dental drill to the face even when I'm not suffering from a migraine.
I'm exhausted but nsot sure if I'll get sleep. Ugh.

Sunday, March 26, 2017

Do the thing, win the points.

You know when you go to do a thing (anything) and then you get up and do something else necessary (thing two) instead, and about a half hour later you remember that you got up to do thing one in the first place? That is me today on infinite repeat.

Saturday, March 25, 2017

Short Post

Mom and I did a whirlwind run to East Tennessee and back. We were able to fit nearly everything into the Tardis. The last of it is less than half the truck bed.

Had a really great if short visit with Osaka and Ringo. We went to Boone, NC and visited a favorite eatery, Tucker's Cafe, as well as The Mast Store in Valley Crusis I think.

Weather prevented further joint adventure. We drove through light snow on the way there and back both. We also enjoyed lunch with Osaka's brother as we passed through Nashville, and so visited the Lego store there.

We got back roughly as scheduled and have been physically recovering since. My body took issue with the constant change in elevation and air pressure at our highway speeds flying through mountains and valleys. I had extreme physical distress the first day after we got back and have had fits of joint pain, migraines, etc.

Despite the pain, it was a good trip. I was so happy to be there at the farm with my very best friend and her son whom I also care deeply for.  I also enjoyed real proper winter weather for a few days.

School started up again Tuesday for me, and I've slipped back into my schedule. I'm hoping current migraine settles down and I feel human again soon. :)

Thursday, March 9, 2017

General Update

I thought I posted here after my follow up appointment but apparently not.

Copied from my post in my Bipolar Support group:

"I had my follow up appt with my primary Tuesday before class and after discussion he has upped my dose of Ritalin. He wants me to take the same dose per, four times a day instead of twice. This is supposed to even out the mood shifts I’ve been experiencing.

I’m also packing and organizing for my trip back to Tennessee to see my BFF and collect the rest of my belongings from storage at her place. We are planning to visit a few yarn stores before Mom and I turn around and head back.

I’m currently doing all of the prep, sorting what I need to take and trying to pack efficiently so we have more room in the cab of the truck. I made a checklist to be done over the next few days and I’m making decent progress at a reasonable rate.

We leave Friday evening and so my goal is to be packed, dressed, and ready by 4pm so I have two hours of flexibility to math out how I want to stack things behind my seat on the way there."

I've done everything on the checklist I made except load the truck and put last sundry items in suitcase.

Faythe, one of my sisters will be at the house doing some sundry maintenance and to help me unload on arrival back. Logan has also offered to help if he is not at work when we get in.

I am so thankful for my family and friends. I seriously could not ask for better people in my life. I am super excited to be visiting Osaka and Ringo, and Mom has timed the trip so we should actually get to catch up a bit before we turn around and head home.

I officially have just one class now. I failed my online courses. I could not do the heavy coursework because of health and inability to focus (because pain). It sucks but I'll deal with the school and try to prevent academic probation with medical documentation. I also have to argue with them that ASL counts as a language towards a degree so there is that too. I'll deal with that later in the semester.

Monday, March 6, 2017

Antibiotics again.

Thursday I woke up feeling more like death than usual. I'd been having some symptoms of a larger infection but I want sure what kind because my ambient pain levels make it hard to tell till an infection is BAD.

I emailed my doctor Wednesday with my concerns,  and woke Thursday and knew immediately there was no way I could focus in class or handle going to school. I don't miss class unless I'm actively in hospital or need to visit a clinic suddenly.

I wasn't able to secure a ride to the clinic but I was able to discuss with my Dr over the phone and he sent a script for an antibiotic to my preferred pharmacy (which delivers).

I have correctly predicted or self diagnosed several infections already so my Dr trusts my instincts on this. 

I have a week of antibiotics which I'm a few days into now. And Spring Break is around the corner. I see my Dr face to face tomorrow and will discuss how the Ritalin is working so if changes need to be made,  we can do that before Mom and I make our round trip to Tennessee. 

Saturday, March 4, 2017

Dreams on ethics and sexuality.

Weird dreams about arranged (royal) marriage, discussion of sexuality and the ethics of marrying two people to further the cause of one kingdom or get rid of a useless heir (same country). Fictional world, interesting dynamic. As I began to wake up the details kept shifting in that lucid dreaming way, and the true dream began to fade.

Initially it was an angry asexual Prince being married off to another Prince due to lack of available female offspring from the perspective of Ace's father. Other kingdom is relieved to have found a country happy to marry a Prince to their homosexual heir. Subplot morality discussion about concubines to further both royal lines.

Then I woke up because of course I did. It was really interesting, and I would totally read it as a book.

Wednesday, February 22, 2017

Mocking Bird

I am perplexed. Every morning at sunrise I am serenaded a new mixture of noises chirps and whistles. I think it's a mocking bird and I think it nests not far from my bedroom window because it sounds like it's perched directly inside my head singing its little birdy heart out.

Some days it sounds like fairly standard bird call. One day last week it serenaded me with car alarms and cell phone alert noises mixed with chirrups and shrill whistling.

Right now? It's quacking. I don't have words for this bizarre creature.

If I weren't in the continued throes of constant migraine I would be even more curious. At the moment I'm torn between curiosity and yelling through the window to sing to someone else.

Did we just not have mocking birds in Virginia? I've been out of Texas like 10 years till June of 2016, so exposed to other wildlife. I vaguely remember mocking birds singing at me while I walked to school as a child but I don't know what to do with this.

Tuesday, February 21, 2017

No unsolicited medical advice.

Well I just posted this on facebook:

"It's time for another Rory PSA apparently.

Anyone who has known me longer than a year and has been in contact knows I have a laundry list of medical conditions. I don't really discuss them in detail publicly if I can avoid it.

The main reason being that I am inundated with unsolicited medical advice EVERY SINGLE TIME, the other reason being that seriously it's no one's business unless I choose to make it so. So, if I am posting something like say that a side effect of a new medication is unexpected or unpleasant that is not an invitation to tell me via private message OR publicly that I wouldn't be sick if I didn't take that "poison".

Are you my doctor? Are you any of the specialists I've seen over the last 6 years ruling things out and trying to find a medication balance? No? Then stop where you are and cease typing your essay on the evils of Big Pharma.

It is not welcome, I WILL delete it, and I WILL be offended.

The only circumstance in which advice is welcome is a post specifically asking for thoughts, comparison to your own circumstance, and experiences. I do write posts like that, and they can not be mistaken for anything else.

If you choose not to read this fine, but you don't get to be surprised or upset when you get deleted comments."

I posted yesterday something expressing dismay about an unexpected side effect of a new medication and deleted no less than 3 comments telling me what I should be doing instead of seeing my doctor and taking my carefully picked medications.

I saw red and decided to sleep on it before I posted. There have been private messages in the last month that have said outright that all of my illness is in my head. So, well thanks for helping me clear out my friends list I guess.

Monday, February 20, 2017

Everything hurts.

Hmm. I slept well the first and second night on the new med, but no sleep this night (Sunday into Monday). I asked my doctor if I needed to alter my sugar or caffeine intake because stimulant, and he said that while in general yes that would be great for my health, it would be a bad idea to do it while adjusting to a new medicine. That seems logical to me. I'm not pre-diabetic or anything, but part of how I treat my migraines is with a high-caffeine soda. I carry a bottle with me at all times with my little pillbox, and usually a bottle of water. My brother Logan generally keeps a 12 pack of my preferred soda on hand for when I'm over.

I had maybe a swallow of soda about 7pm Sunday when I woke up again.

Backtracking slightly, Saturday was a day of DOING. I had a checklist, this check list, and I kept updating it as I got things done.

~~
1. Shift the dolls to the dining room in stages. DONE
2. Take morning meds. DONE
3. EAT BREAKFAST!! DONE
4. Set alarm for mid day dose Ritalin. DONE
5. Eat lunch. DONE
6. Remove anything from walls where floating shelves will go. DONE
7. Empty dresser(s). DONE
8. Shift dressers temporarily into living room. DONE
9. Sort the crap hanging on bedroom door. DONE
10. Do at least 1 FULL CHAPTER of German in stages. (did not complete)
11. Check grades. DONE
12. See if school ID is in system and if so apply for bus pass. DONE (ID still not in system)
13. Sanity break (as needed). DONE
14. Re-hang curtains that I accidentally pulled down yelling at neighbor dog. DONE
15. Get dressed. DONE
16. Hang shelves with assistance. DONE
17. Put dressers back. (DONE) Put dolls back. (This will be a multi-step process in retrospect.)
18. EAT DINNER. DONE
19. Take out recycling. DONE
~~

So, all of that. Some of the dolls are still sitting in the dining room, and going back to check my list I just realized I forgot to transfer the laundry from washer to dryer. So, I've just taken care of that. I suppose I should start the next load but I'm pretty tired and sore from moving ALL of the furniture in my room around and weird contortionist bending getting the shelves screwed in properly.

Faythe and I ended up with multiple joint dislocations by the end of the day, but the shelves are up and functional and over the next several days I will re-distribute things that are stored and set up some doll staging areas I hope.

Sunday was a day of rest and recuperation. Faythe was manic and not up for socialization which I get. She was really awesome and patient with me and I'm thankful she was willing and able to help me hang the shelves. Mom scooped her early afternoon Saturday, and took her back home after church Sunday afternoon. Mom mostly hid away from us while we did things because it can be overwhelming when we get together. No malice, it's just two bi-polar people with common interests can be incredibly.. powerful as an experience.

So Saturday was moving furniture and cleaning up to prepare and then getting four floating shelves done, remembering to eat, remembering to medicate, etc. Sunday I was up early because I take my medicine at 5:30am, so that I am medicated for school, and my instructions were very clear to make it a daily routine because it would be more effective if I did so. So up early, had a snack. Mom and Faythe were up an hour or two later and we had a nice breakfast then. I had backpain and resurgent migraine issues so at around noon I made apologies and laid down on an icepack in the dark. I slept till about 7pm. That seems to be roughly when the medicine begins to wear off, and so I've been in my more standard pain fog since waking.

In 20 minutes now I'll take my first dose of medicine for the day, and then have a large snack a half hour later. Today my plans are roughly to get some school work done, catch up on laundry, take frequent breaks, manage pain, and go to a concert (for a school assignment but also to enjoy) with Mom this evening. It's going to be a very long day so I'm hopeful that I can get a cat nap in the afternoon before the concert. No longer than like 3 hours.

This is roughly how my room looks now:




Not pictured, my blackout curtains, or my TV/makeshift desk area.

Saturday, February 18, 2017

First dose effects.

My new medicine arrived approximately 3:30pm. I took it immediately, and made note that I'm supposed to take it a half hour before food and putzed around on my phone for a half hour. Then I had a serving of hummus and 6 grain crackers.

About 5pm, I started to feel different. I described it via text to a friend like this:

"I think the Ritalin is making me more chatty. (We'd been back and forth for few hours intermittently but my input spiked about 5pm)

It sort of feels like... controlled mania? Less impulse, more drive?

It's kind of an alien feeling. Being able to focus on more than one thought without feeling like I'm running down a trail taking every fork.

My anxiety is a bit spiked because I have literally never felt this way on my life so = scary, but I'm oddly calm at the same time?"

By that last text it was close to 6pm. I had in the period from 4-6pm done this, much of it simultaneously:

Picked a doll to take to the PieFive Meetup. Changed his clothes, changed his eyes, changed his wig. Made a short shopping list. Taken measurements for the floating shelves to be picked up at Ikea. Responded to some comments on Ravelry, responded to 3 other people via text. Restrung the arms on chosen doll, changing the hands which I noticed had some dye transfer from awhile back. Got dressed. Drank a bottle of water. Prepped the last of morning doses for this week with my morning doses of Ritalin, and put my school doses for the week in my carry with pill box. Checked Facebook, actually posted replies on Facebook, posted an actual status message.

That is more productivity in two short hours than I have had since my last big manic swing and none of it was self destructive.

I went on to power through a Meetup with Mom and local doll folks, a trip to Ikea for the floating shelves, arranging for Faythe to come over to help me hang the shelves, and actually taking photos and interacting socially at the Meetup.

I am utterly exhausted as I HAVE BEEN, but I managed to do what has been WEEKS worth of things in 2 hours at home and 3 out and about. That is beyond huge.

Now I hope beyond hope to sleep like the dead until morning. Tomorrow  (Saturday) I have lots of prep to do before those shelves can go up AND school work. Sunday will be set aside exclusively for rest. 

Thursday, February 16, 2017

New temporary (?) Medication

So, my doctor thinks my pain is related to stress. He wants to try a low dose stimulant to help me get through school and if that doesn't work, alter my anxiety regimen. I was concerned he meant lower but he actually meant a higher dose or something in addition to what I take. So starting tomorrow I'll be on 10mg Ritalin daily for a month to try and help me focus for school. The pharmacy has to order it because it's a lower dose than they generally stock.

Tuesday, February 14, 2017

Still alive I guess.

It's taken me longer than usual to get things synced up with the new phone.

Thanks to Mom and eldest sis, I have a fully functional phone again, through Sprint on the family plan that eldest sister already has in place. I've been slowly shifting information and contacts from my wifi only phone to my new phone.

In addition to new phone I also received a free with coupon Samsung smart TV, because we purchased through BestBuy. I set that up and have set aside my older perfectly good TV to set up for movies in the studio for Mom and me.

I'm struggling with what feels like a nonstop migraine loop which is less intensely painful than the 9 month one but I think it's  close to 2 full months now, so there's that.

I'm also struggling to keep up with my online coursework. I'm so behind. :( This migraine is not making that easier.

I'm otherwise well I guess. 

Saturday, February 4, 2017

New Phone, surprise bonus TV.

I accidentally stayed up all night. I accidentally slept in all morning Friday so I guess I shouldn't be terribly surprised but it's no less an unpleasant surprise.

Let's see, I've had a busy few days. Wednesday evening Mom and I went to a local Sprint store to see about a family plan for just the two of us, as the one she's been on with my eldest sister was up for renewal and said sister had expressed interest in perhaps looking at different options to save money. After waiting about an hour and hearing from a customer that they had been there for THREE hours, we made a discreet exit and I remembered and voiced to Mom, that Bestbuy has phones and can generally do plans with the big companies, and why not head there, since they were not about to close and would be more likely to have enough people to help us.

This ended up being the best option. It turned out that eldest sis was in a Sprint store elsewhere sorting out a phone and some contract details, and we were able to coordinate with her and add me to the plan. Mom put the deposit on a phone for me (my old phone is not Spring compatible, though still functional), and we ended up walking out incredibly pleased with the service, and with a coupon for a free TV (under $200). We came back next night to buy a protective case for phone (shuffling of funds made it impractical to do so at time of purchase) and had another employee help us to find a TV that fit the "free" description of the coupon. We left with a nice solid Otterbox case for my new Samsung Galaxy S7, and a 32inch Smart Samsung TV, which I set up today shortly after I woke up. Er, today being Friday, since I've not slept.

Plans for today proper (Saturday) are to meet up with eldest sis and Faythe in Carrolton for our monthly quilt block club and quick chat. After that I will be confirming some things to help a friend with the most recent Volks lottery.

I am hoping to get some sleep before we drive out to Carrolton, and I am hoping to be able to finish the computer things early on, as I am knackered.

I'm sure there is something else important to share but I can't recall what it is right now. Those of you who have had my number in the past, give me a poke, and I'll text you. Some of my contacts didn't transfer, because I didn't want to transfer all of my games (and risk using up all the shared data from the family plan) and am using my old phone (Samsung Galaxy S6) as a pocket tablet for gaming exclusively.

Oh and in setting up the new TV, I set aside the older one (still functioning quite nicely) and swapped my DVD/VHS player with Mom, since she was a bit aggravated with the programming of hers. At some point in the not too far future they will be put to use in the studio so that when inclined we can comfortably watch a movie or two together. :)

Monday, January 30, 2017

A flurry of activity.

I tried casting on Link's stocking hat from some yarn I had set aside for exactly that, and after 14 rows frogged it. I didn't like the yarn for this once it knit up. I didn't like the increase the pattern used.

So, I decided to shift things around so I could access the yarn stored under my bed. This turned into a 3 hour SORT ALL THE THINGS but I must say I feel incredibly satisfied at the end.

I reorganized both the under bed storage and the bookshelf. I sorted through most of my school work and paperwork from last school year and what I have for this one. I dug out two Halloween candy bowls worth of yarn to play with. One bowl is labelled skeins and one is remnant balls.

I also dug out Epona, who has been sitting in her box on the bookshelf. At some point after spring break she will be carefully disassembled, washed gently but thoroughly, and maybe given blushing and/or painting.

While I was under the bed I pulled out some fabric to make Link some trousers, and tucked that into my sewing box.

The folding table that I use as a desk is covered but organized. In a moment I'll decide where to put Epona, the yarn, my home school work, and then I may organize something else.

All week I've been depressed to the point of completely apathetic but my frustration with knowing what I wanted to do for the hat put enough of a crack on it that I made myself start digging out yarn. Doing that gave me drive to sort out some odds and ends the had gotten beneath the bed. Then I starting just putting things away.

Mom has been tackling boxes on the living room over the weekend and it resulted in a clearer happier living room and a crabby Rory because Mom had legitimately useful things for me and every time I turned around having cleared my makeshift desk there was something new to put away.

I did find the words to ask her to please not just put it on my bed or on the school space I'd made, and it all smoothed out quickly. Now I have borderline ambition, and I will finally give myself the haircut I desperately need, and hopefully be able to sleep WELL.

I've been in truly awful headspace for at least a week and this feels like a bit of relief, hopefully not intermittent.

Tuesday, January 24, 2017

Terrible Migraine

Yesterday I woke about 9am from a strange anxiety dream in which I could not find a clean or undamaged restroom. The thing that actually woke me was a background conversation in the dream where one party casually said to another that my struggle to find a clean and serviceable restroom reminded them to never trust a restroom in your dreams. I was up and stumbling down the hall before I was even half conscious.

After a moment I realized I was in massive blinding pain as consciousness set in, and I found myself in the dark restroom lit by only a night light, which felt insanely bright. I could also hear the fan ticking in the next room, dogs barking, and someone doing yard work a couple of houses away. Generally with the restroom door closed I might hear the fan if the house is completely empty, but not the rest of it.

I realized to my horror that I had a migraine about as intense as the one that lasted 9 months and had me wishing for a swift death. I took my medication, stumbled around in the kitchen and made instant mashed potatoes and lay down with an ice pack over my eyes. I was awake for about two hours as I carefully ate, took meds and vitamins and tried to gauge my trigger(s) for this awful thing.

I woke a little after 5pm still in agony. I got absolutely nothing done for school or online courses. If it had been today there would be more swearing. There was no way to push through that monster. It's still lingering but I medicated first thing this morning and and did as much preparatory self care as possible.

I have class at 12:30 which goes to lab straight after and I should be done by 5pm. Unless I hear from Logan, my plan is to bus home and go straight to bed.

I'm behind on my online coursework so yesterday is frustrating but there is nothing for it. Tomorrow I'll do my best to catch up but I suspect one of my triggers was sitting at the computer with the headset on grinding through school work for about 5 hours without a proper break. There is so much work to do that it takes that kind of grinding.

This does not bode well for my online courses. No more online courses.

Saturday, January 21, 2017

Inexpensive Retail Therapy

Mom and I needed some out and abouting, so we went to two of the Daiso (Japanese dollar stores) in the area and found some nice goodies.

Mom picked up some chairs and benches for the yo-scaled dolls, and some tiny little dog statuettes suited more for Pukifee. She got some other bits and bobs but we had specifically gone out to get two more of a kind of doll scaled chair we found there several weeks back, and we had good luck.

I got this:


First a sketch pad with ladybugs on the front, 100 pages. Also two different paperboard boxes for doll accessory storage, one with a London theme, and one with nesting dolls and little flowers on the lid. There is a yellow mid-century style chair, a realistic fake plant, tiny paperboard chest of drawers (also elephant themed), and a waterproof elephant themed tote. At checkout I got some Hello Panda snacks and on the way home a large box of cheese crackers.

I like these cardboard boxes for doll clothes and shoes etc. They are relatively sturdy and much prettier than a bunch of plastic bins. Eventually I would like to get some floating shelves to put the dolls on stands, and I would put the decorative boxes on top of the dresser where the dolls have been sitting since I got the dresser.

I love going into Daiso. I always find something neat and everything I got today was $1.50 or less, except for the cheese crackers which I bought at Kroger on the way home.

All in all I think it was quite a pleasant day out. I really needed the getting out of the house NOT FOR SCHOOL, and Mom was looking in particular for two more of the chairs (which we found) for a table set she pieced together last time we went to Daiso, scaled to the Yo-sd crowd.

The rest of my weekend and Monday will be dedicated to plugging along in my online coursework, and Tuesday and Thursday are on campus school days. This was a really nice sanity break, and all told I spent less than $20 at Daiso (combined from both stores), so it didn't break the bank either.

Wednesday, January 18, 2017

First Day(s) of Spring Semester 2017

First day of school was long. I had my regular visit with my Doctor first as that just happened to be the day we had scheduled it. My blood pressure was high (usually this is not a problem for me) and between weather blowing in, and stress over school I triggered a migraine first thing in the morning.

Because I am me, I had my medication with me and took it as soon as the car stopped moving in the college parking lot. My hands shake quite a bit sometimes and I didn't want to throw pills all over the truck.

I was able to pick up my schoolbooks but one was listed as back-ordered (which I found out is not the case) and one it turns out the teacher doesn't use. So, first thing tomorrow after squeezing in for Math testing, I will be exchanging that book for the one I need (which IS in stock) and canceling the order for the one that is listed as back-ordered, as well as picking up a pack of scantrons for Geology labs.

Oh and after school I went with Mom to Knit Night in Grand Prairie for the first time since Thanksgiving-ish. I got to see people I've missed but the trip all the way out to Arlington from Garland and back is exhausting when compounded with everything else of the day, and I'm not even the driver. :P 

Today I have dedicated to trying to get my online classes appropriately started, saved the syllabus for each, looked at scheduling etc.

I got the Music access key in easily and set that up. It looks like I am required to attend a classical music concert and write a paper about it for this course in order to pass. I wish I had known that, as I don't really have the financial flexibility to buy concert tickets. Ugh. I'll work something out of course.

I went to register my key with the course for German and found that the key from my brand new shrink-wrapped book had an error of "already been used" much to my horror. I sent an e-mail off to the book company as instructed in the setup instructions that come with the key, and took a nap because I was just DONE. When I woke I saw a response and sent off pictures of my receipt, my name, name of college, photo of the key card etc., so that they could verify my purchase.

A MIRACLE OCCURS! As I was writing this, I got the response from the book company and they have confirmed my purchase and sent me a new access key. Blessedly, I was able to get it resolved with the book company in less than an hour from their original reply.

So, now I'm going to get that set up, tackle today's German activity and figure out what I want to eat in short order.

Today has been almost as exhausting as yesterday but once things are set up, they are done, and it's just a matter of keeping up with course work so at least at this point all I need to do is school work.


ETA: My German textbook is the wrong damned edition. I've opened the book and redeemed the key and it's not compatible with the course. ALSO, the course is not free form as original described and I have a strict schedule to follow with no resource with which to do so. *high pitched screaming*

Friday, January 13, 2017

Stressing over school part (??)

I was all set to write that things had settled down nicely and then yesterday I had another meltdown.

Mom and I got a student bank account set up at a local chain for myself, mainly for FAFSA to drop whatever is left over after tuition and books into. Small hang up yesterday was that we couldn't get the e-statements set up, and that was apparently the straw that broke the camel's back for me.

Today I was able to get that sorted out quickly and found an e-mail re-confirming FAFSA but also confirming student loans (that I DID NOT SIGN UP FOR OR APPROVE) which I will be sorting out before my first class and after my doctor appointment Tuesday morning. Ugh.

This evening I ordered my books for pickup at the school and the lab book for Geology is back-ordered but I'm not as concerned about that as I maybe should be. I expect I will have resources intended for use knowing that books are sometimes back-ordered at the start of class.

My German and Music class are both online and I'm told I need a microphone or microphone headset for online labs for German, so we'll be looking at those and seeing if I can find a reasonably priced one (less than $30?) for use for school.

I'm hoping I can get buy with my built in microphone on my laptop for a little while at least.

I'm tired. Mom is also very probably tired. I'm irritable and trying really really hard not to be so with Mom, with mixed results. Non of the complications are her fault, and nothing is the direct fault of the school but I feel that Murphy's law is at work and it's driving me crazy(crazier).

I have been in a perpetual state of high stress since October and it's wearing on me, and Mom I expect. I just want to go to school and move on with my life. This should not be so difficult.

Friday, January 6, 2017

I am absolutely not okay.

I had a really ..unusual start to my day yesterday. I was awake (barely) as Mom was preparing to head out the door. Jan 5th was final deadline for paying for classes and school website is saying both that my financial aid is fine, and also that I have not been awarded financial aid. I did everything I could think of to sort it out, and Mom said something kind of off hand about how I seemed to be giving up on school, and I flipped out.

Not at her. I just, short-circuited. I printed every single confirmation from Fafsa directly, from the school, from my emails, printed them all off, and we went down to the school. Mom remarked (while I was in this meltdown frenzy) that I at least seemed to be fighting for it. That stung. I was unable to articulate anything at the time. At the school they said there was nothing they could do but put a notice to hold my place in the classes I registered for until Jan 13th pending financial aid award. It's not an extension, it doesn't offer any real protection, it's essentially a digital post it saying that financial aid is still being processed. This seemed to be enough for Mom to feel that something was different.

I broke down the rest of the way. I cried in the car on the way home. I could not articulate anything. I took my medicine and stayed in bed unable to communicate. Woke in the evening, still broken, took my next dose of antibiotic, and went back to bed.

I don't know how to discuss what happened. It should probably be discussed, as this is the second time an offhand remark intended to.. reassure? Inspire action? I don't know, has caused a complete and total meltdown, in which nothing actually changes other than my mental health taking a huge leap off a cliff.

I am not much more functional today than yesterday. I feel angry and hurt, not specifically at Mom, and I also feel inadequate and vulnerable and want to hide in a bunker with a huge metal spikes around it.

Attempts to communicate have been challenging, and I am not expecting a vast change in that any time soon. Socially speaking this is an enormous leap backwards in progress.

Monday, January 2, 2017

Upper Respiratory Infection to ring in the new year.

I thought I caught a cold at Christmas. Maybe. What I definitely have now is an upper respiratory infection. I expressed my concerns that this might be the case last night to Mom, and we agreed if my doctor's office was open we'd try to get seen today. His office was indeed open, and he had an opening at 10am, so I went and he confirmed my diagnosis (I've had them before I knew the symptoms), and after a short stop for ice cream, and at the pharmacy I'm home and in short order will be taking a much needed nap.

For the last several days I've been treating my "cold" with sudafed, airborne, lots of water, and rest. Most of my sleep has been in 1-2 hour bursts where I wake up feeling like I haven't slept, and my throat is on fire.

Mom feared strep (which I am immune to, but CAN be a carrier for) so we did elimination testing for that. She was visibly relieved when we were told it was definitely not strep.

I'm on a mid-level dose of antibiotics, because when I had bi-lateral pneumonia in June 2015, I was on SUPER INTENSE IV antibiotics and now my body laughs at the basic tier stuff.

While we were out and about we stopped at Half Price Books where Mom picked up a new journal, and then went to a pharmacy (not MY pharmacy) where she attempted to transfer her medications because her insurance is no longer playing with her pharmacy of choice for 20 years. While we were there, I got the flu shot because my doctor does not offer it in office, and then we found out at my pharmacy we could have done it there for cheaper. Well now we know for next year.

At this point I'm waiting for Mom to return from picking up a Lego set for me at Walmart that was an irresistible sale price online (almost half-price), which put it just within my reach. I gave Mom my cash, set up the order, and she paid with her card, and is now retrieving it from the store, since it was a pay online, pick up in store deal. 

I really want a nap, but so does Mom, so I'm going to wait for her return because I feel it would be unfair for me to go to sleep while all she has wanted was a nap since about 10:30 this morning. So, in trying not to be a jerk, I will wait for her return, thank her for her assistance again, and encourage her to nap, while I prepare to do the same.

About Me

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I'm Rory or Rorek in most places. I design, sew, and craft, primarily for my Asian Ball-Jointed Dolls. I also dabble in interior design, but I'm a little out of practice.

I post about the things I enjoy, which are sewing, photographing my dolls, designing new outfits, knitting, which I started in September of 2008, thanks to my Mom, and occasionally drawing, or painting.

I also post about Life Events and how they affect me and those that I love.

Currently I am living in DFW, Texas in the USA and working towards a degree in Theology.