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.


*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.

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

If there are typos I fix that before my appointments.

About Me

My photo
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.