Lhunpaurwen's Ramblings

This is Tesla. His registered name is Tesla Leuchtet Den Weg vom LhunThyla ( Tesla Lights The Way - from LhunThyla ; my owner/kennel tag ). Tesla is an AKC registered German Shepherd ( Alsatian ). He is 13 weeks old. I have had him for about a week, but didn't want to post anything publicly till I knew for sure I was keeping him. He is a Galliard, born Waxing Gibbous ( a day shy of Ahroun! ) . Very vocal and likes to tell you about all the things. He has a great personality and is already more like Journey was in his confidence levels, which is a good thing. Certain personality traits about Tesla remind me of Journey and Chakotay both. Tesla's namesake is in honor of Nikola Tesla, famous Serbian-American inventor, electrical engineer, mechanical engineer, physicist, and futurist who is best known for his contributions to the design of the modern alternating current electricity system, wireless communications, experiments in wireless power transmission, and much more. Tesla coils, anyone? :D The symbology behind "lighting the way" is both toward that namesake, and the hope he will light the way for me as my new service dog. So far he is doing well with basic training and everything he is exposed to in public. His hips and body structure look great; he does the "Superman sprawl" which is an early sign hips should be okay. When I went to meet him and was doing the initial evaluation, he was quite the character. While talking to the breeder, I set my treat pouch down off to the side. Next thing we knew, puppy had picked the whole thing up and was happily trotting back toward the garage carrying it! A metal trash lid dropping right behind him when he wasn't expecting it and umbrella/object testing did not phase him, he had quick recovery. He happily greets strangers and other dogs. As long as the OFA xrays come back good, he will be clear medically. As long as he can overcome any adolescent fear periods he might have, he should be okay behaviorally. Fingers crossed he will be the one. Third GSD is a charm? Lets hope so. I will be setting up a fundraiser to help cover his medical and xray expenses, and so we can get into some training classes for socialization as soon as possible. Anyone interested in donating can send donations to leopardwolf@gmail.com via PayPal. I am offering artwork or creative things in return, based on donation amounts for anyone interested. Thank you for your help and support! Follow along here: http://www.facebook.com/JourneyWithServiceDogs

Stress Flair Having an autoimmune attack relapse thanks to some unnecessary stress regarding being out of $500 from my service dog/medical fund, but we'll talk about that in detail later if the money doesn't magically appear by this Friday. My body is having an absolute fit. Face is swollen again from angry glands and blocked draining. Reef Scare Woke up from pain early AM to discover to my horror that my reef tank temperature had dropped to 73F. It's supposed to be 80F. I just replaced the old heater with a brand new one with a gift card from Petsmart, because it was showing signs it would go soon. So here I go deliriously flailing through pain and medicated stupor, thanking the gods I hadn't thrown the old one out yet, digging out the other old one I use for water change heatups to try and bump the temperature back up before anything died off. Unfortunately it looks like one of my SPS propagates is toast. Half it already slothed off and bleached out, the other half tissue necrosis and slothing starting. I fought with this species since I first got the frag from father in law's tank as a rescue. If the tissue bed isn't thick enough it self destructs at slightest change. That's how I realized the old heater was starting to go, the temp wasn't holding stable and it showed signs of distress from it. Thankfully I still have a thick patch growing nearby and it looks okay. Sometimes the colony will recede into the structure and might come back with time, and a lot of luck. Otherwise I will try and transplant some onto the coral bone and hope it takes hold. Because, science! Art Share I have gotten used to the new medication enough to where I think I can get back to detailed art work without making a total foobar of it. I have a few long overdue pieces I will be sharing for winners of contest ages ago, and I will be working on the happy dog painting, streaming more of the progress with it, probably starting some tonight if I can get this swelling to go down a tad more so I can see out both eyes clearly. I will post the stream link once it is set up and live when I do work on it, though may just randomly work since I can't predict how angry my body will get. Hoping everyone else is having a better kickoff into 2017.

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 dragging through the past two months or so with a Sjögren's flair up. I get them regularly and stress and weather conditions, alongside complications from my Ehlers-Danlos and other conditions, can make them worse.

Been having a horrible time with my tooth and jaw issues. The nerve pain has gotten so bad I have had to increase the amount of Gabapentin I am taking and taking it to near maximum daily allowances just to get relief. It's gotten so bad I have had to blender things I eat and stick to eating soft stuff. It's insanely frustrating because the pain is so bad at points between it and the Gaba I can't think straight or get anything done. I have a whole mess of updates and things to share for Chakotay that are back logged, among other things.

This is one of the first days the Gaba has been able to control the pain enough for me to sit and type some. I also have some medical updates but that will come in a different post and may wait till Monday since I have an appointment with my Rheumatologist. Hope everyone else is fairing better and doing well.

My birthday is this week, May 21st. This is the new service dog fundraiser. If you have a few bucks to spare, please consider helping. Pass it along too. Thank you.

http://www.youcaring.com/brittney-steptoe-570453

Apologies for the recent radio silence. Been having a real rough go at it the past week or so. My teeth/jaws have gotten worse and the changing weather makes them flair real bad. The nerve pain I get from it is overwhelming. My Gaba meds just manage to take the edge off. But then breakthrough pain hits and I take more Gaba to beat it back. Once enough is in my system, sedating effects kick in and I am lucky if I can manage to remain awake and coherent to get anything done.

On top of that, Wasabi has been sick recently and unexpected vet bills popped up. He is stable for the moment and on a new special diet, but may need surgery for teeth and other stuff. Really uneasy about putting him under with his age of around 12 years old ( he was an adult farm rescue estimated at a year or so old when I found him ).

I had Chakotay in two training classes, but had to drop one to get the refund because his next round of vaccinations are due and I didn't get money I was supposed to for that because of other drama. The only reason we can remain in the other is because a friend/fellow trainer is kind enough to let us sit in on a puppy class she has as an assistant trainer so Chakotay still gets the exposure and socialization. Really need to generate more money for service dog purposes.

Still waiting to hear back from SSA. Have a doctor's appointment on the 12th with my Rheumatologist. Trying to find out about getting in for oral surgery somewhere so I can FINALLY get these horrible teeth taken care of. They need to come out and I need implants, which is going to cost a small fortune ( insurance does not cover implants normally, even if I had insurance, which I do not). Because of my EDS and other medical quirks, I can't do dentures. The longer I wait, the worse it gets and I am risking more serious bone loss and complications in my jaw and facial structure. I am already in constant pain and having major difficulties chewing/eating and talking for extended amounts of time. It is miserable, but there isn't much I can do without the money.

I tried going through LSU dental school but haven't heard back on the new referral in months and last I asked they claimed they didn't do them anyway ( which I find odd since you know, where else is a dental surgeon going to learn to do the procedure? ). They told me I'd have to find somewhere else to go. So now I am searching for an oral surgeon locally who might empathize with my situation and be willing to somehow work with me before this becomes more serious than it already is and requires more extensive corrective surgery of not just dental structure, but entire jaw bone structure.

Happier updates with puppy pictures and art stuff later.

Quick update. Ankle is still tender but as long as I am not on it too long I can tolerate the pain enough to walk on it for short amounts of time and for short distances. Puppy is doing good, will write more about that in a puppy update I am working on.


Getting increasingly aggravated with the SSA and this disability determination process. They sent me ANOTHER letter requesting info I already gave them. This is the third time they have done so.

I filled out the application online and it specifically asked for this info and I filled in the blanks. Then I also submitted it with the info I gave them to copy in person. All of that info was carefully organized and selected because they had already asked for it, or I knew they would ask for it, so I included it thinking it would help them and make the process more efficient.

So how can you not have it and still be requesting it unless clearly you haven't bothered to actually look through my entire file?

Or you are just wasting time, resources and paper.

The fact that one of my conditions is actually listed on the SSA "auto determination list" should make this entire process totally irrelevant. But noooope.

Because, government.

I have been a little scarce recently. Taking care of medical related stuff. I am finalizing my Disability/Medicaid application process next week. I will be going in person with faithful Ember at my side to present my 3inch+ thick folder of medical records and documents, letters of support ( thanks again to those who wrote them ), and fully detailed write-up of my conditions and their effects on activities of daily living and how they adversely effect my ability to work for gainful employment ( lack thereof ) or enjoy activities the way I could before my body decided to try and self destruct. I am going in fully expecting I will be denied the first time and will have to appeal. They normally almost always deny you the first time, even if you have a metric ton of supporting evidence like I do. If by some miracle I get approved on the first try, it will be so totally unexpected I will implode from sheer relief and happiness. I won't hold my breath though. Thoughts, prayers, luck, and well wishes are greatly appreciated!

I'm in New Jersey visiting Mike. Was sort of a last minute trip. He had time to take for vacation and we decided to do it now, because his time was limited and flight prices skyrocket for the holidays. I'm thankful we have a chance to spend time together. Had a chance to go see Jen and Girlie cat and visit with them and have dinner. Was so nice being able to see them again and love on Girlie. Went to my first Rangers hockey game at Madison Square Garden in Manhattan. It was an amazing game to see in person. Had a ton of fun.

Took Ember along with us into Manhattan. She did flawlessly well for such a loud and overstimulating place as the big city and a sports arena can be. MSG staff were awesome about Ember being along. She got an official MSG ID card and everything. I have been taking her out with me since I got here, each time we went anywhere to get her re-accustomed to working in public and to see how she'd do with it, before deciding to take her into Manhattan and MSG. Ember went back to her solid work ethic as if nothing ever changed, even after not working for almost a year. She alerted me during the game when I got distracted by the intense beginning and forgot to take my medicine. She also woke me at one point when we overslept ( alarm didn't go off ) and I was late taking my meds. Woke up with my heart racing ( yay tachycardia ) from a dead sleep to her on the edge of the bed trying to get my attention. After she woke me and I showed her I took my meds, she went back to doing her own thing.

Ember will probably end up going home with me and be put on an anti-inflammatory to help keep her comfortable while working. Mike has been pretty unhappy about it because she keeps him company and keeps him sane around here, which I can't blame him for feeling that way. I wouldn't take her if it wasn't as much of a medical necessity as it is. Hopefully it will only have to be for a few months.

I was originally supposed to fly home Nov 16th, but plans suddenly changed last minute when I heard back from Canine Partners hours before my flight. Originally I was supposed to contact them when I got home to set up details for me going to their facility for a tour and an interview with the training staff. But that would have been more money spent to travel there to not even know until after April if I was being accepted as a client.

I told them I could stay if they could somehow work me in, that I'd change my flight home. With the holidays and other things going on, it didn't seem like it would be possible. The woman who has been helping me got in contact with the training director and they approved it! I have a client interview with them on December 3rd and will get to work with some of the dogs so they can see what might be a good fit. I really, really hope that means being partnered with a successor dog is right around the corner. Maybe I will get lucky enough to be in this coming Spring team training group.

Apologies for the lapse in presence on and off recently. I have been busy for a little while working on putting together all of this information for my disability application process. Digging through old paperwork to find things to use ( thank goodness I kept it ), collecting and sorting documents from providers. Just waiting on responses from two doctors and that should do it. I wrote a ton of things with medical jargon and ICD-10 codes to throw at them. 10+ pages to tell them how all this affects my daily life and ability to function. Hoping "doing the work for them" will strengthen my case some, but not holding my breathe. I expect I will be denied the first go-round, as that seems like the popular thing for them to do. Will probably be submitting everything before the end of the month. Anyone interested in reading any of it and giving their input? Also on that note, would anyone like to write anything on my behalf for me to submit to them? On why you feel I should be able to finally get this help I needed ( and probably should have asked for ) years ago and why it is more important I have it going forward? I mean, lets face it. My body is self destructing itself one collagen molecule at a time. That isn't going to change anytime soon!