The name of the arthritis family is seronegative spondyloarthropathis. You read a general description here (this page does not mention the neck and chest pain):
The good news from the doc is my bloodwork looks good. So, instead of having to take injections, I have started taking a DMARD (disease-modifying antirheumatic drug) called hydroxychlorquine (also known as Plaquenil). It does have a few side effects, naturally, so I now need to go to the eye doctor every year to keep my eyes monitored. (I see the eye doc tomorrow) It also takes a long time to accumulate in the system and start working at full-speed so I will be slowly getting better.
Doll Meetup
I actually had enough energy to attend a local doll meetup in Grapevine, TX today. Some of the people with dolls are folks we have met and talked to at the local anime cons! Here is one of the doll group shots:
We went and had some food afterward (dolls sitting on tables and chairs with us!), then visited a doll store that had a lot of the typical US and European dolls but no abjds. I talked to the owner a little about them - she was not familiar with them but was now interested in them! She was going to see if any of the future doll shows she attends will have them.
Trains
Joules, I took some photos of what few train cars were on the track at Grapevine today - the engine was probably being used for the weekend tours. I will email Kai (via you) the large jpgs. The Tarantula caboose WAS there!
I need to read all the literature the rheumatologist gave me (for my homework before next week's appointment) before I can tell you exactly what it is afflicting me but it looks like it is one of the 100 types of arthritus. The various seemingly unrelated symptoms - chest, spine, lower back, heel and shoulder blade pain coupled with the chronic fatigue, low-grade fever and the burning sensation along my esophagus point to a particular kind that enflames these specific areas.
Did you know psoriasis has a type of arthritus attached to it? It is not one being considered but I think this is what rat is dealing with.
I almost started crying when the doctor gave her diagonosis. I did say out-loud, "Finally! Now we know what's going on!" It was great I was not longer 'stumping the doctor'! I was impressed she spent an entire hour with me, was very attentive and listened to what I had to say. She explained a lot of things and spouted all these long names that do not have any shortened names to go with them. I asked if there were any shortened names for any of it to go by and she laughed and told me no. *laughs*
The doc was funny because she thought I was funny. She kept calling me names like 'wild', 'cute', 'bubbly' and other things like that. She liked how I described myself in the two-page list of symptoms - about how I had a 25 year-old brain living in a 85 year-old body. Yes, I type all this stuff out and give to doctors so they have a record of everything at hand. It gives them something to read immediately when I walk through the door instead of them pulling info out of me as they talk to me and it is a way for me to 'remember' everything up-front instead of having to think of things on the spot. I usually forget a point or two if I do not make a list.
Blood, urine and a TB test was done and next week she wants to run a test to see the carpel tunnel damage, which can also linked to this type of arthritus. It is really amazing how this is all tying itself into a neat little package, with all the pieces finally falling into place.
Some of the treatments may or may not work. One she thinks WILL work will be expensive and will require me to give myself injections once a week, but it will also help kick the shit into remission and improve my quality of life. We will know more next week after the bloodwork gets back.
I gave the doc a big hug before I left and thanked her. Then I almost started crying again. I cannot help it - to know relief is finally going to happen is a wonderful feeling.
Anyway, even though I was in a lot of pain (I do not dull the pain with meds before an appointment because I think it is important for a doc to get an accurate analysis of my problem) rat and I went out for a celebratory dinner at one of our favorite local Italian restaurants.
I will post the name of the bugger later, after I have read up on it with the stack of literature.
I need to rest now but I thought you folks would want to know the verdict.
Spent most of the weekend in bed with various types of pain.
Did get out for breakfast and family visit on Sunday.
Will be seeing a rheumatologist this Thursday. One of the bloodtests came up with a lupus marker, again, so maybe I really do have it after all, along with something that fucks up my chest.
I have already done some reading up on the disease and while some of the symptoms are definitely there, these are a lot of the same symptoms a lot of illnesses have. The neurologist is just wanting to find out what it's not.
If I DO have lupus, it's not like I haven't altered my lifestyle already, in the ways the info talked about.
Thought those of you interested in bjds might like to see a few photos of Shuichi. Still slowly working on lj for everything...
Here he is, hanging outside our apartment.
I love this hoodie! It is so Shuichi! Neko ga imasu!?
Closeup - showing Shu is still wearing "Eiri" eyes.
Closeup - I finally figured out how to pop Shu's head so I could change his eyes to one of the many violet sets I have for him. While I liked the deep colour of the Soom eyes I got him, they looked black in regular light. I ended up using the violet set I got from iplehouse. I have more eyes on the way, too. Oh, he is wearing his iplehouse 'purple and white' wig here, which looks more like dust rose and ecru.
Back to the burgundy wig to colour test the eyes. I finally found a hot pink fur wig that may work for Shu and it is on its way. ?
imayb1! Your cds arrived yesterday! We will check them out.
mel-mel-chan showed a new BL anime at club yesterday - it was fun msting it. Chockful of bishies! It is called Gakuen Heaven. The alternative title is Boy's Love Scramble and if you go to their official website (Japanese - http://www.gakuenheaven.com/), you will see yet another name: Boy's Love Hyper. It seems to be set up to purposely have double entendre in the dialogue and in the 'gaze' exchanges - like it is gently and gleefully poking fun at the BL genre. Only the first ep is available at the moment at animesuki (released for download last Thursday), with 30 eps all together. I think (and hope) it will be a real lark. Looks like it has a video game attached to it, too.
Well, the hotel has been set for yaoicon and the pre-registration form has been posted. rat and I will be working on setting everything up this weekend, including booking the hotel, and mailing out our applications on Monday.
Idiot rat left the new camera at the office - which means this beautiful weekend I had planned on taking pics of Shu in his various clothes and wigs outside is wasted. I am working on a public lj for all this and will be backdating entries so they fall on the dates they occurred, not when I was able to finally get them posted. It takes energy to do this and I have a dearth of that lately. When it is ready, I will post the lj link so those of you who may be interested can check it out. It will be pretty darned silly in many ways and probably boring to those who are not into plushies, stuffed animals, fashion dolls, action figures and ball-jointed dolls.
I am finally starting to feel a little better but I know it could come back quickly if I am not VERY VERY careful. I still need to rest and sleep even more than usual to get better.
I have stumped yet another doctor. They took a bunch of blood and the doc plans on talking to my main doc about what to do after the results come in. It is to the point they are trying to rule out certain things that may look like costochondritis but are other things. Then I may be sent to a rheumatologist.
Joules!!! Your package arrived today and your latest book is absolutely gorgeous! The layout is relaxing and peaceful, if that makes sense. I learned SO much, just by looking through it! It also reminded me how I used to wear a lot of different amulet bags with various stones while I was dealing with the same kind of pain I am dealing with now. Time for me to pull them out again!
I keep a pink Depression Glass something or other (I think is a pedestal for another piece my Grandmother broke centuries ago) with my larger tumbled stones and crystals in the bedroom. You can see it below.
THANK YOU AND KEN FOR SIGNING IT AND SENDING A COPY TO ME! *BIG HUGS*
SHUICHI HAS ARRIVED!
I will have to talk about Shuichi's arrival later - I am in great pain and will be going to the pulmonary doc tomorrow at noon-thirty and see what can be done. I spent this evening unwrapping a multitude of packages (and cataloging with the digital camera), typing up my drugs list, getting my outline set up with my symptoms, blah blah blah.
Did not get an evening nap at ALL, which is my usual habit - and probably one of the reasons why I am awake at all hours. Why am I awake now? No clue. I hurt like hell and haven't had a chance to even lie down tonight and rest my chest.
Joules!!! Your package arrived today and your latest book is absolutely gorgeous! The layout is relaxing and peaceful, if that makes sense. I learned SO much, just by looking through it! It also reminded me how I used to wear a lot of different amulet bags with various stones while I was dealing with the same kind of pain I am dealing with now. Time for me to pull them out again!
I keep a pink Depression Glass something or other (I think is a pedestal for another piece my Grandmother broke centuries ago) with my larger tumbled stones and crystals in the bedroom. You can see it below.
THANK YOU AND KEN FOR SIGNING IT AND SENDING A COPY TO ME! *BIG HUGS*
SHUICHI HAS ARRIVED!
I will have to talk about Shuichi's arrival later - I am in great pain and will be going to the pulmonary doc tomorrow at noon-thirty and see what can be done. I spent this evening unwrapping a multitude of packages (and cataloging with the digital camera), typing up my drugs list, getting my outline set up with my symptoms, blah blah blah.
Did not get an evening nap at ALL, which is my usual habit - and probably one of the reasons why I am awake at all hours. Why am I awake now? No clue. I hurt like hell and haven't had a chance to even lie down tonight and rest my chest.
Thanks: --> to Lia, my sensei, who has inspired me to draw again. I
wouldn't be doing this without your support, Domo Arigato!
--> to Talon, for sending me her fabulous fics, inspiring me with her writing to draw my first
illustration for a story and actually liking what I drew.
--> to Dasia, for her words of encouragement when drawing her original chara.
--> to Joules, a wonderful epic fic writer, for liking my art enough to want to post them with Talon's
and her own stories.
--> to Lutra, the other half of the epic team, for being so supportive.
--> to Jacque' & Becca Raddittzu, we met on eBay as bidder and sellers and now we are face-to-face
friends. You showed us the real DBZ with your fansubs. It's all your fault the house is full of
doujinshi! *LOL*
:: welcome to bakayaro onna's mindless ramblings, rants & raves :: 
