Thursday, November 19, 2015

More Thorough Medical Information

In a previous entry, I wrote briefly about the details of my two ER visits in the last month. As I think I said in that entry I had a neurology appointment set for November 19th.

In keeping with health disclosure, last night while I was in ASL class I had what was described to me as a seizure. I'm not sure which kind of seizure, but several classmates noticed it, one of them a nurse, and another a mother of a child with a seizure disorder. I don't remember the incident, just that my classmates kept asking me if I was okay. I had been rubbing my eyes, as the overhead projector was flickering it hurt my eyes. I had taken off my glasses and was holding my head in my hands trying not to look up at it, because it hurt to look at, and I was told after class that I froze for a several second period, as well as visibly clenching my jaw,  and then resumed rubbing at my eyes as though nothing had happened. There was no obvious reason to freeze, the teacher wasn't signing at that moment, there was nothing that should have grabbed my attention, and I don't remember the incident at all. I told the classmate that approached me that I had an appointment with a neurologist in the morning and would tell him of it.

This morning I woke up after not enough sleep (night time class), and Osaka went with me to my neurology appointment because I had nerves and she is an incredibly good and supportive friend. When we arrived I had a bit of.. unsettlement as there was someone singing and playing the guitar in one of the adjacent rooms and it felt a little like music therapy in a mental hospital, which did not help my nerves at all.

The staff were very friendly though, not at all judgmental, and we didn't have to wait long at all. It was really bizarre (in a good way) to see my doctor at the actual time of the scheduled appointment.

I don't remember much detail from the appointment because I was stressed out and in quite a bit of pain. Osaka said I was wibbly; kind of quiet and.. trembly sounding.

The doctor took a moment to look over the information I brought in. Some was requested, but I had also typed up a summation of my side effects on the new medication, and an up to date list of medications and dosages, which did not match what the hospital had on file. He entered all of that in there, and asked questions about family history. I mentioned that my youngest sister had a diagnosis of epilepsy, and went over details in the medical history of myself and close family members.

Once that was through he asked me to take off my shoes and socks, stand up, and walk toe to heel to the other side of the room, and then back again. I had a very difficult time staying upright and imagine that I was flailing my arms for balance. I think he asked if I felt dizzy and that I told him I did.

Then he asked me to sit on the medical..table? The thing you sit on at the Dr's office, and he checked my reflexes, did that touch my finger, touch your nose test, looked at my eyes with the lights on and off, and then told me I could sit back down and put my shoes back on. I think he did some other test stuff but I can't clearly remember.

After I had my shoes back on he said that while he didn't think it was epilepsy he did have a theory, but it required extensive testing and he was concerned because of my lack of insurance that the cost might be prohibitive.

He asked if I had looked into insurance and I explained that I've been jumping through hoops for about two weeks trying to get insured either through the government insurance or state medicare. At this point I am eligible for healthcare through the government market but can't afford it. I do not make enough money to qualify for the tax credit to afford it. Also Virginia opted out of offering anything other than family planning(or preventing) care, so.. I'm not eligible for that either, or rather I could get on it but it wouldn't cover ANY of what I need, so I didn't continue the application for that. It didn't help that the person reviewing my case was poverty-shaming me.

Anyway he said he was certainly willing to work with me, and do tests as I can come up with money for them or manage to get insurance. He prescribed two new medications for my migraines (no doubt at all that I am experiencing actual migraines), and we scheduled a followup in two months time to hopefully do the first test that will either eliminate or confirm epilepsy. He said that on the brain level epilepsy and migraines are very similar, but he suspects what I actually had was something called POTS or postural orthostatic tachycardia syndrome.He believes I very probably also have sleep apnea which makes things worse for both migraines and POTS if that is indeed what I have.

The EKG(?) test for epilepsy would cost between $150-300 he guessed, for someone with no insurance, and he said the sleep apnea test would be in the thousands. He did say that insurance would almost definitely cover all of the tests I need at a very reduced rate, so if I am able I should try to get insurance. I think that I have exhausted all of my insurance options at the moment.

So I am left with the quandary of what to do. I am going to try and pull together money for the epilepsy test by my January followup appointment, and go from there I guess. I did want answers and I got some, but nothing is firm without proper testing. So.. in the meantime I do at least have better migraine medication. I think I'm taking what Ashbet takes for hers (please feel free to confirm or deny in the comments!). In fact right after I left my doctor's appointment, I texted in order Mom because I promised I would, and Ashbet because I know she is aware of POTS, and might have some insight.

It was really nice to be taken seriously. I have spent the majority of my life being told I am being melodramatic, or a hypochondriac, or just.. ignored. I was taken seriously, treated with respect, and I feel validated that NO, there IS something physically wrong, thank you very much.

Fun fact. There are 15 hospitals in the US with a POTS specialist. My hospital of choice is one of them.

Follow up with neurologist in two months.

After putting all my data into the hospital computer system, my doctor did a quick evaluation and said that while it COULD be a seizure disorder, he was more inclined to think it was postural orthostatic tachycardia syndrome or (POTS) along with a likely diagnosis of sleep apnea. Further testing is required. Lack of insurance has pushed testing back so I can try to come up with the funds or insurance. Testing without insurance would cost into the thousands of dollars. He also prescribed imitrex and topamax in the mean time to help with my migraines. There are apparently generics available for both so I'm hoping I can scrape together enough to pick those up.

Saturday, November 14, 2015

Thinking about dolls and the future.

First I want to thank everyone who has been able to assist us. Because of your incredibly generous efforts we will be able to pay some of the due bills and also eat, and for that we are incredibly thankful. I continue to be so very thankful to have friends who are able and willing to assist in many different ways, and I want each of you to know that I would not hesitate for a moment to do the same for any of you. I care deeply for my friends, and if you are seeing this message, you are among those. 

Completely unrelated to my gratitude above, I’ve realized that I really need to play with my dolls more. I was poking at Den of Angels updating some details in my profile and realized that of dolls I’ve purchased over the last several years, the only one that I have really and truly played with in that time is October, and more recently Owen. I only have “Look faceup” photos for many of my dolls, and that is just sad. 

I realized this because I received notice that a doll (two actually) that I had on layaway from awhile back, were finally shipped from the company to the person who organized the group order, and I was thinking that while I am certainly excited to receive them, I haven’t really done much with any of the dolls I’ve gotten in the last several years because of work and now school. I miss my dolls. 

I’m strongly considering going through the resin bits box and selling off bits and pieces I bought for characters that never happened. I have a handful of rolling heads, with characters in mind, but I have no intention of buying their bodies until I am OUT of school, so.. I find myself wondering if I should really be hanging onto them or if I should let them go to people who would appreciate them. It’s something I will have to think over hard. My collection is large, and we don’t have much space in our apartment. 

Also it’s very likely that I will be moving at the end of this first school year and the details are not set on that so it might be worthwhile to have less things to have to pack come June(ish). Nothing is set yet and the details are quiet for now because I need to focus on getting through the rest of Fall 2015 semester and all the way through Spring 2016 semester. 

One thing that I am planning, is to get my driver’s license this spring. I never have, and I may not always be able to drive depending on medications, but I would like to have the option, and depending on where I live, I may not have access to public transport. I’m also planning to get my US Passport to make things easier when I move. All of my legal documentation is changed at the federal level, and having the US Passport as my main identification will help in getting hassle-free ID in my new state regardless of where I end up.

Friday, November 13, 2015

Financial Assistance

In the interest of full disclosure, and not being privately shamed via PM, I am asking for help again without a crowdfunding site. They take a percentage, and require you to post to facebook, and while I am not ashamed of asking for help when I need it, I don't appreciate someone messaging me specifically to try to evoke a feeling of shame, as happened when I was asking for assistance (even just a signal boost) to help pay for my medical bills from my most recent bout with pneumonia.

So here's the situation. The past two weekends I have ended up in the ER. The first weekend it was on Saturday, and I had called out of work Friday due to migraine. Generally I work through them for school and work but I had gone past my point of functioning days past by that Friday, and my medicine had long-since stopped helping. So, due to unknown factors I kept passing out, and someone at work REALIZED this, and they made me go to the hospital.

The ER sedated me and released me after giving me a "standard migraine cocktail" intravenously. I ended up stumbling towards home still heavily drugged and realized as I reached the school library (my ER of choice is right next to my school) that I was in a state and should probably not be up and walking around, and so I waited at the bus stop there for the correct bus, and managed to get home somehow. No one was the least bit amused.

If I recall correctly the first ER visit I got a small script for something that was supposed to help with the migraines but it just made me feel sick, so I stopped taking it after 2 days.

So.. I missed several days of work that weekend. I went to school, and then by Sunday (last weekend) I just.. could not function anymore. I got dressed, I called work and told them I was going to the ER because I was getting worse (which was true), and I called a friend and asked them to please drop me at the ER because the buses do not run on Sunday and I was not well enough to walk the 2 miles to the hospital. My friend picked me up and dropped me off, and I waited about 3 hours until I just could not take any more anything and inquired politely if there was somewhere quieter I could wait.

I ended up being put into a quiet and dark room for a few minutes and then I was escorted to a proper ER patient room and left to change and sit for about a half hour. I was listless and speaking in a pained whisper by that point, and my eyes were rolling around in my head as I tried to block out the light with anything I could. A nurse came in and asked some questions about why I had come back so soon, and what exactly my complaints of pain were, and then they sent me for a CT scan.

After the scan, the doctor came in and gave me a once over, had me trying to focus my eyes on her face, then her finger, touching it, touching my nose, touching her finger again in a new location, and bringing my finger back to my face, etc. I don't know what this test does exactly but she seemed displeased by the results. She went mentioned a bunch of migraine drugs that do NOT work for bi-polar people (usually) and I said so, as I'd done research after the first ER visit, and she said she would look into low cost options with generics after I told her I could not afford to go get medicine.

She left and came back, and told me she thought she had found the right drug, and then she had a nurse give me something to sedate me, because I still had not been given anything for the pain or to help in any way. They took blood before the medicine, and after the CT scan. The CT scan came back clean, no legions, masses, or bleeds.

Then I think I slept for about 2 hours. People came and went, because I remember the light going on and off, but I don't recall details. I was heavily drugged and began to feel some relief. They let me sleep off the worst of the sedation and made VERY sure that I had in fact secured a ride home this time, and then I came home. 6 hours had passed at the ER.

Both trips were absolutely necessary. Both trips cost me most of my working hours for this paycheck. I still need to see the neurologist. I need to come up with money for the copay, and food.

I have applied for food stamps again, and medicaid or medicare (the one that doesn't require disability) through the state and will hear back from them on Tuesday according to the call I received today.

In the meantime Osaka and I are in dire straights. Between my medical costs, and her HAVING to be home with her special needs son, we are having a very difficult time finding rent each month let alone money for food, clothes, electricity..

Those who know us, know that Osaka has worked as much as possible, and that her son has made it impossible to work outside of the home. She was doing daycare out of the home earlier this year, but the family was on a waitlist on base, and got into that, so that ended. She has been dutifully putting in applications and has had some interviews and is waiting to hear back from one that would allow her to work from home with a fairly flexible schedule.

In the mean time rent is overdue, my check won't even pay my phone bill, and we have no money for food. This is not a matter of not trying or not caring. We have managed to pull through as things have gotten tighter and tighter for three years now.

What we need (aside from being approved for help with food and medical) is a bit of help for the next few months. We know that things will be fine by February once I get my I'm a Student tax return, and she gets hers for her work this year, with the child tax credit, but from December to February we are going to have a very difficult time.

If anyone is willing or able to assist, via signal boost or donation, would appreciate any help. I hate feeling like I'm begging for help, but we are in desperation at this point.

Anyone who wants to help can link back to this post, or make a discreet donation via paypal (rorekgwolfe(AT)gmail(DOT)com). ALL assistance is appreciated.

Tuesday, November 10, 2015

Quick ER Update

I went back to the ER on Sunday because I hit a solid 10 on the pain scale and just couldn't... anything. 

A good friend took me to the ER where I waited 3 hours, was quietly put in the "family" waiting room because noise pain (this is a room where they to you someone has died I was told), and then was rolled into a room and left for a half hour or so. 

A nurse popped in and asked some questions about my medicines, shined a light at my eyes, took blood, and left again.

A bit later the Doctor came in to see me and asked why I had come back so soon and I explained how I was drugged and released last time and asked for them to please do some tests, some kind of answer and maybe try something else for the migraine.

I got about 5 hours of initial relief, and the migraine came back but not as strong. The dr thinks my fioricet with codeine may be the culprit in the never-ending migraine loop. It's the codeine and magic bipolar brain going LOL NOPE THIS MEDICINE NO WORK NOW LOLOLO. 

She prescribed two medicines to take daily, one twice a day, the other thrice daily, and prescribed enough to get me through to my neurologist appointment on the 19th.

Edit: The medicines names, the generic at least are Diclofeniac 100mg and Gabapentin 100mg. I believe in that order based on what my pharmacy receipt shows, reflecting price of pills.

Sunday, November 8, 2015

I don't even know.

What is the opposite of homesick? Not quite a rhetorical question.

There is a very very very small part of me that misses some aspects of Texas. The rest of me would be dragged back kicking and screaming and crying. What I miss primarily are my family members and a few select very special friends, some from childhood, but most from my very dear internet family that have all somehow settled in my home backyard across the Dallas Fort Worth Metroplex.

What I do not miss? The heat, the culture. The constant judgment real or not, that I have felt with every fiber of my being since I was wee. The bugs in the summer.

I miss my family. I'm missing so so much of my family. I have seen my youngest niece a handful of times, and my two nephews by blood even less so.

Where would I go? What would I do? Could I stand to be in Texas again as the man I am, versus the person who left 10 years ago? Would I falter? Would I fall? Have I grown enough to endure? I don't know. I don't really want to think about it.

I like Virginia Beach. I love the culture. I love the people (for the most part). I love the ocean being so close I can TASTE it in the summer and feel it in the winter.

What about somewhere else? Do I still want to move to England? Do I want to move somewhere else entirely? Could I make it on the West Coast? What do I need to do? What do I want to do?

Do I feel like a complete human being? Am I healthy enough to live on my own? Am I healthy enough to advocate for myself as needed in ANY circumstance? Where do I go from here?

This is not about school by the way. I have straight As for the semester and have been busting my butt to maintain them. School is fine.

Also I don't know if I mentioned it here but last weekend I passed out at work and went to the ER. They drugged me and released me after determining that I needed to see a neurologist and ruling out head trauma from my falling. I never struck my head. I have an appointment on Nov 19th to have I don't even know what kinds of tests done. I need to pull a $60 copay out of somewhere for that. Atypical migraine symptoms, dizziness, halos, disrupted speech, and lasting and intense pain that did not respond to ANY medication (including the cocktail they gave me in hospital). So.. need to figure that out. The appointment conflicts with my English class but my professor is understanding of the circumstance and is willing to work with me in regards to it.

Wednesday, October 28, 2015

Properly Introducing Marek (April Story Fall)

This has been more than slightly delayed because of school, health, and work. Finally introducing Marek!

Osaka painted him up for me a couple of weeks ago and we put in some temp eyes and I gave him some temp clothes and then this evening I finished up a wig that Osaka put together for me until I can find the right fiber wig. I like the fur wig look just fine, but I have a particular look that I want for him, and it's hard to do with the faux fur.

Anyway pics!

Marek: "Why are you wearing my shirt?"
Robbie: "Have you seen my pants?" T_T;;

Sunday, October 11, 2015


I have decided that I want some gorgeous Scandinavian Vikings. In doll form of course.

I've settled on Iplehouse EID Akando on the super hero body with real skin (light tan) color, icy blue eyes, and silky blond hair down to his waist. Also EID Arvid in maybe normal skin with Auburn or ginger hair and beardscruff. Both will have chest/torso scarring from stupid teenage adventures, in skinny-dippying with murderous mermaids. Akando will have a deep piercing wound(scar) at about lung level on his right side. Arvin will have a deep slash (scar) from groin to collarbone deeper at the top, and both will have much less severe scars scattered across limbs and faces. I had already determined that my Amelia was descendent from Vikings so they fit nicely there as part of her village. I fancy the blond being her uncle and Arvin being uncle's best friend.

Also since in The Forest no one wears furs or leathers they could have lovely bulky knit tunics for warmth with fitting trousers or leggings.  Mostly I just want a pair of gorgeous scarred up Vikings.

Tuesday, September 22, 2015

ASL is going well I think.

For my last couple of ASL classes, I've had earplugs in because of migraines but I think I may just wear them for each class now. It helps deflect distracting noises and forces myself and my classmates to sign and gesture instead of sign and whisper if our instructor can't see..

I asked our instructor if I was being rude by using earplugs and she said I was fine whether I needed them medically or not. It was a huge relief.

I attended my first Silent Dinner and Deaf Culture Event on Friday and was horrified that another first year class was using English speech and ASL interchangably. As I understand it, they are learning at a slower pace, a full semester for ASL 101, whereas we are learning ASL 101 and 102 back to back for this semester.

We have finally begun to pick up speed and are learning past abcs, and early numbers. It's still mostly social things, how to identify someone, how to ask interests, etc but it is actually feeling like progress now.

I am relieved. So far my grades are shaking out across my courses as solid A, and I'm going to do all I can to study and keep up. I think I've found a good groove with my homework and I haven't missed an assignment yet.

My English 111 class is my only non-condensed course so I'm actually ahead there.. It's hard work and I'm terrified of falling into old school habits but I think I might be doing okay.

Friday, September 18, 2015

Marek arrived safely today!

My April Story Fall arrived today, and I will try to have photos up soon, like in the next week. Osaka and I have figured what kind of faceup he needs, and if weather cooperates that will happen some time this weekend. I don't have the eyes I thought I wanted for him (he was going to have blue eyes) but I did have some that fit really well in him for right now, so at the moment he has light grey eyes. I think I know where I got them so I should be able to get his blue eyes in the near future.

No introduction yet, but his name is Marek, and he will be introduced once he has a faceup and pants. He will have a fur wig initially, because money, but I will hopefully find an appropriate wig for him in short order.

Marek will be my aging goth, with careful faceup work to give him subtle crows feet by the eyes, and some gentle aging. He is a bit taller than I expected, and his head is a bit smaller than I expected, but a big fluffy wig will help, and it may seem less obvious once he is clothed and faceupped and all done. :)

Osaka and I did some poking at astrology and determined he would be a Taurus, so his birthday would be May 18th, just picking based on descriptions that matched how I've seen him. This works well as Taurus and Cancer are a good romantic match.

As soon as I have pants made, and hair (with or without face) I will share him.

ALSO need to do a 10 year anniversary photoshoot with Ro. He turned 10 on August 29th. So.. I need to make that happen. I've been distracted with school and work so that may not happen until some of my classes finish up. @_@

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 Coastal Virginia in the USA and working towards a degree in American Sign Language at Tidewater Community College.