Lhunpaurwen's Ramblings

Apologies for the delays in more frequent updates. In wake of all the stress and preparation for my Disability hearing, the summer weather really decided to kick my ass and has caused reoccurring flairups of my autoimmune and neurocardio problems and related symptoms. I am still sick, but the bulk of the stressful events triggering symptoms has passed, so hopefully my body will stop freaking out so much. The summer heat is finally breaking a bit and there is more breeze instead of still, hot air. Once it cools more, I hope things will be more manageable. A lot of reoccurring migraine activity and blurred vision or related issues from my Sjogren's has made it difficult to focus on creative things both visually and mentally. Even as I write this, I am seeing halos and haze and have to take frequent breaks to rest. During the downtime I have been working on various little things as able. I am looking forward to sharing them all. It might just be a combination of some photos and short writeups to begin with, but I am hoping to generate enough content during my "stable" periods to help compensate for the downtime when I get sick in the future. That has been the biggest issue I have faced, the gaps in activity and posting new content. I want to be able to get to a place where I am able to make updates more frequently even when I am really sick, to break the pattern of falling behind every time I am. It has been a slow learning process to find the middle ground. I really appreciate everyone's continued support and encouragement while I try and find that happy balance between being a creator and living with chronic illness. Upcoming topics will include art and creative things, gardening ( in the limited capacity I can handle ), biology and botany geekery, bonsai, raku, and discussions about small ecosystems found in aquariums, terrariums, and updates about mine and plans for upcoming development. Hope everyone is well.

Went and donated dog and cat food, litter, and some assorted toys and care products to the LA SPCA today to help with hurricane relief efforts. Let the strong young men volunteering there do all the lifting. They were thankful for the help. Just wish I could do more.

Still alive. Been really sick on and off multiple times with flairups, including falls and passing out. Started as soon as the temperatures began to get warmer outside. Been borderline heat stroke every day since. Can't get anything done because I overheat too easy, even inside with the AC running full blast. The little energy I have has been totally devoted to preparing for my Disability Hearing at the end of August. I haven't really been online on FB or anywhere else at all since April or May, so if I missed anything major, I apologize. Thank you all for the birthday wishes back in May, they helped cheer me up while I was sick. Hoping it cools off outside soon. I hope all is well for all of you. If I missed anything you want me to know about, please share. I will catch up as I am able to, but probably won't be real active till after my Disability Hearing on August 31st. Positive thoughts and prayers for a positive outcome are appreciated. Wish me luck!

Had the icky sickies of a flair and sinus infection since my last post. Had a lot going on with training with Tesla, physical therapy, and an unexpected trip back to Texas to look for rental options. I went alone with the dogs this time because Mike didn't have enough time to take off work, and needed the time and money for moving. As we found out the last time, the rental market there is crazy and if you don't immediately jump on something you like, you lose it. This happened several more times over the past months and even during the trip. We finally managed to find something that will work for us, and were approved! I will be going back and forth between there and my aunt's house while waiting for my disability stuff to be sorted out, and also so I can help family with some things. Mike is moving down from NJ to the new house mid March. I will move most of my things over to the new place so they are there for when I can move there full time. Now he is closer to his employer and better job opportunities. It is only about an 8hr drive from New Orleans (more for me since I need to stop frequently to take breaks), so we'll finally have a chance to be back together again after waiting so long and it will be easy for me to travel back and forth as needed. So insanely happy! During this recent drive there and back, there was some avian amusement. I literally watched a chicken try to cross the road in Caldwell, TX. By a busy traffic light, the young bird was at the edge of the road and would start to dart out, but then run back when a vehicle would get too close. This happened several times as vehicles ahead of me passed it. I slowed down, and it tried again. This time making it halfway across the road. It had to fly frantically the rest of the way to avoid traffic. The chicken crossed the road, and it did get to the other side! The next month or so is going to be crazy busy. Excuse my sporadic presence online.

Ember and I went to an appointment with a new doctor the other day. When we walked into the room, we found this anatomy model, who looked like it had seen better days. The femur bone there was broken in half, taped together with duct tape to make it whole again. After the doctor comes in and we introduce ourselves, I gesture to the model and say "I hope you don't plan on fixing me like you fixed him". The doctor grins and replies "Duct tape really *can* fix anything!" He's a keeper.

Waiting to hear back on a referral to see a Neurologist and Pain Specialist, probably also ENT doctor. Hoping that I can finally get the MRI I have been waiting years for. Depending on what they find, there might be some treatment options to help with the Trigeminal Neuralgia as far as injecting the nerve or other procedures. Getting the injection in my wrist tendon is painful enough. I can't even imagine how much an injection to a facial nerve is going to hurt. They seriously better gas me to do it, because I know for a fact I will feel this through any local or topical they use on me, and it will trigger my neurocardio stuff in a bad way. Feeling like a skewered piece of meat as a giant needle is jabbed into your jaw socket. Awesome! http://s-media-cache-ak0.pinimg.com/originals/70/9b/8e/709b8e8d182f1a67b93791021d65a6d0.gif

Bright and blessed Christmas / Yule to everyone

Thank you to everyone for their thoughts and concern over me having to go to the ER yesterday. ER finally confirmed what I have suspected for a while - I have Trigeminal Neuralgia (TN). And it is probably directly caused by my Sjögren's Syndrome. They gave me a new medication that tries to target TN nerve pain, and it was finally able to break through the agony late last night/early this morning. I went to bed with the lower left side of my face swelling ( inflammation related ), and when I woke up today the entire left side of my face was swollen and eye watering from the puffy around it, making it hard to see out that side. Using an ice pack on it, so will see if that helps reduce the swelling. Otherwise I am stable, still in pain but new med is helping. Follow up with primary doc and Neurology Monday. I am a zombie, will be while getting used to this new med. Recap on what led to this point: I was in so much pain, I hadn't been able to sleep for days ( worse than normal ) because the pain always gets insanely worse at night. I have an extremely high tolerance for pain these days, and my Gaba med normally takes enough edge off that I can "ignore" it ( just suffer through it ). On the second day it was getting to where I couldn't tolerate it anymore. Aunt tried to help by getting me all sorts of ice/heat packs and OTC stuff to dull pain. It got so bad that night/early morning that I almost called an ambulance ( my aunt was asleep and she can't drive at night so only way I could have got to ER is that way or call cab and I was worried Medicaid would not cover ambulance ride and had no way to verify at 2am ). It was weekend, no way to speak with Medicaid people to see what was covered, I just decided to suffer through it. On the third day of insane pain I went through my entire daily dose of Gaba in 3.5hrs and it did nothing. I knew it would only get worse again come evening and I didn't think I could deal with it again without wanting to destroy something from how much it hurt. For pain to hurt me bad enough to make me give in and go to the hospital or ER on a weekend, you know it is seriously bad. So neighbor took me that evening since aunt can't drive at night ( thanks again so much! ) and dropped me off. The EJGH staff was AMAZING. First person we were met with was security, and he stopped me when he saw Ember.... I was seriously ready to destroy someone/something at that point from the severe pain and I was having worried flashbacks of the horrible experience I had several years ago with the security douchebag at LSU hospital ER trying to deny me access if I didn't show him "proof" Ember was a real service dog ( this is against the law ). Thank the gods, this lovely gentleman was far better trained and considerate. He noticed her vest and the patches clearly defining what she was, smiled and said nevermind and told me to go ahead. I heard other hospital staff whispering as we wandered past, all saying "its a service dog" to each other, sounding as relieved she was the real deal as I felt that they recognized what Ember was. They were tons more professional and knowledgeable. That's why I chose to use EJGH general practice doctors for my care, and their conduct in the ER only reaffirms I made the right choice. Compared to the LSU ER horror, getting in to the EJGH ER was quick and rather painless. I was worried it would be crowded on a Saturday evening, and while there were enough other people, the staff had a nice system set up for intake and directing patients. They brought me to an exam room in a wheelchair to avoid me going full syncope due to the pain I was in, worried to make me walk that far down the hallways. I was thankful for that. Ember got to show off what a well trained dog she was and that made her happy. She's been so worried over me the past few days. The nurse helped me into the hospital bed and Ember took her place beside it to wait. I got to watch some HGTV while waiting for the doctor. We don't have live cable anymore so it was a treat to watch. The wait for the doctor was brief. She went over my history and current symptoms, I explained I had experienced this problem numerous times before but this was about the worst it had ever been. After a quick examination she agreed based on my history that Trigeminal Neuralgia was most likely responsible, probably directly caused by my Sjögren's causing irritation/swelling/pressure against the nerve bundles somehow. She wrote me a new prescription to try Carbamazepine, got an additional referral to Neurology for me, told me to follow up with my primary Monday, and that was that. They discharged me with paperwork and took me to wait for a cab in the lobby, and were kind enough to make the call for me and inform them I had my service dog with me. It was while waiting I noticed some tightness in my face on the left side, the effected side. I was still in a ton of pain and rather out of it, but realized after poking at it gently that it felt like swelling, and not realizing it was there before I got a nurse to ask the doctor. Unfortunately since they had already discharged me, it meant I would have had to have gone through the whole intake process again, and my cab driver showed up at that time. Not wanting the poor gentleman to wait or have come out to get me for nothing, I decided it was probably from my Sjögren's attacking the glands or something. I have had milder swelling where the salivary glands are before, figured that was it and decided it wasn't worth the trouble to wait around for them to likely not do anything else for me anyway. Couldn't be medication related because I hadn't started the new medicine yet, so clearly it was inflammation. I figured if it got worse, I could go back. The cab driver was very nice and considerate, thought Ember was just amazing. He called her a Rougarou ( Louisiana folklore / French for Werewolf ) when we first got in and told his dispatch he had "Miss Brittney and her Rougarou". That made me all sorts of happy and geeky, and when I responded showing I knew what the term meant, he was just as delighted. It was a pleasant drive home with good conversation, as much as I was limited to talk at the time. Much thanks to Metry Cab and Mr. Jim! My aunt was able to drive me to the 24-hour pharmacy just down the block, since it wasn't too far and well lit with street lights. Had to wait forever for the new med to be filled. Finally got home. Took meds. Became a zombie. Finally got some rest. Took me way too long to write this so it makes sense. The end.

I have been pretty sick since last time I updated. I started physical therapy again the week before it hit really bad. It's a flairup caused from over exerting myself, and amplified by the weird changes in the weather here. Haven't been sleeping well to begin with, so getting up to tend to puppy stuff wasn't as much an issue. It got bad enough that I almost had a full syncope attack during my physical therapy, and probably fully would have if Ember hadn't alerted me in time so I could stop what I was doing and get to a safe position and warn the staff just in case. To make matters worse I ended up falling during some hardcore pre-syncope roller coaster rides at home. Bruised myself up pretty good and was sore as hell. Only to have to go right to the radiology appointments and be asked to contort myself in weird ways and get poked and prodded so they could do the scans, which further pushed my pain threshold. Poor Ember has been hyper vigilant like she always gets when I get a flairup this bad. Unfortunately she has gotten to a point where it is increasingly difficult for her to do anything for me anymore. There have been several times where she lost her footing while counter balancing me and I almost fell down or into something. I haven't been using her for the balance and bracing assist as much because I don't want to hurt her or myself, and that has only made the flairup that much worse because of the added strain on my body. I am getting to where I can use my hands again, now that the random painful skin splitting,bleeding, and other pleasantries that come with these flairs is calming some. One tiny scratch I got on my pinky morphed into a huge gash and kept refusing to stay closed and heal even with bandaids, ointments, and finally going as far as using liquid bandage to hold it together. It was very painful. A similar split formed on the corner of my thumb and has been almost as challenging to convince to stop splitting open and start healing. Even still, I have managed to get 15 ceramic bowl dishes formed and drying as greenware, to be bisqued, glazed and fired to finish, a commission intended for office holiday gifts. I also have full intentions to work on that dog portrait painting, even if I have to fully bandage my hands to do so. I will stream while working on it, aiming for this Friday 16th around 8pm CST for anyone interested.

Went to see another potential foster this evening. Was expecting a 90lb+ dog and the pics even looked it. The dog had lost a lot of weight while in shelter they claimed from depression or whatever. He was a little taller than Ember, and I could imagine if he did put on 20lbs he might be okay for the work. He was perfect with other dogs, cats, kids, living with them all at the foster house. He seemed fine, just lacking in some leash manners but not horrible. So I said I would give him a shot. Stopped by their local Petco for supplies. While fitting a step in harness to this dog, he became reactive. I think it was the way I was touching him or the place around the hind legs and groin area trying to repositioning his body and legs so I could get a better angle to slip on the harness and adjust it. He was stressing some while in the store, but still took treats. He had tensed up and I heard a low growl, so I stopped and watched him. There were people across from us making a bit of noise and they had a dog trying to get closer, so I thought it may have been the other dog I heard. I started to reach back for the hind end to loop the harness through and he tensed again and turned his head slightly so I stopped again until he relaxed and was slack jaw. Instead of leaning in to loop the harness as I had originally planned to ( which would have put my head/face right in line if he swung around on me ), I angled one arm low and came around with the other to feel at his leg and hip, wondering if he was in pain. I moved his leg slightly with my hand and there was a throaty snarl and he was turning to latch for my arm. I managed to block him with the arm I had angled against his chest for safety and held the collar so he couldn't jerk away and try again. When he realized he was partly restrained he outburst with a lot of snarling and a warning bark that had some people coming over to see if everything was okay. Which was pretty embarrassing because I looked like some idiot who couldn't control their dog. That kind of reaction to such simple handling is a serious red flag, and probably part of the reason he ended up in the shelter to begin with. I couldn't risk it. I brought him back to the foster. Goodness forbid if someone else starts to take him home like I did, and is not as dog savvy, and ends up getting nailed by him. I told them what he had done and why I had to bring him back, but I don't think they took it seriously. He was the last dog on my list in the area to check. Another 15 dogs down. All I keep getting around here is heartworm positive and severe behavior issues dogs. That disqualifies them as service dogs flat out. I can't afford to put money out to try another puppy. Going to curl up and cry away my frustrations.