Tags: Sjögren's Syndrome

lwdoodle

Disability Update

Appeals Council threw out my case without even looking at it. They don't care that the judge was openly biased and wrongfully denied me. SSA didn't want to have to pay a 35yr old SSI *AND* SSDI plus back pay owed for both. I had enough work credits through this entire 2yr+ process before my hearing with the judge, but they expired while my case was drug out waiting for a hearing. Thus SSA knew it would prevent me being able to reapply for SSDI after the judge denied me. Now I have to start the process all over. I can only apply for SSI now.
lwdoodle

Meet Tesla



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


My Mind Escapes Me

Facial Nerve Injections?

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
lwdoodle

Stress Flair, Reef Scare, Art Share

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.
lwdoodle

Wash Another Prospect?

Still alive. Trying medication adjustments per doc. Still very out of it at points when meds kick in, so may be a bit scarce at times since I make little sense or write weird things when totally medicated. By time I finish, it will have taken me hours just to write and proof read this, like anything I write these days.

I think I am just destined to have bad luck with my service dogs in training and any service dog prospects.  I was feeding animals this evening. Put my hand in puppy bowl ( as I gave to her ) to encourage her to eat from hand and hands are okay by bowl, something I have always done and normally met with wiggly waggy tails because they get extra good treats in the process.  Well tonight she got a wild hair up her ass and decided to growl at me....a freeze/tense, growl warning, go to eat food again sort of way.  This is after demand bark/yowl/howling for almost an hour because I was in the other room ( eating my own dinner and getting meds ) and she was in here in her kennel ( Ember was laying to her side quietly).  So presumably she was hungry, but still.  Not like she was starving for food or ever missed a meal or had to compete with anyone or anything here for her food.

She has been doing the demand bark/yowl/shriek since I got her.  She has gotten somewhat better ( worse - before extinction? ). I think she learned it from watching the misbehaving pit bull belonging to the ladies I got her from.  Then all she had to do was throw a tantrum of her own and I am pretty sure they must have somehow reinforced it, even if unintentional.  That was at 5wks/going on 6 wks old I got her  She is 7wks now.  Not a good sign as far as the growly resource guarding behavior is concerned.  For a normal pet dog, I could work around and through it.  But it is a very undesirable trait for a potential service dog prospect to have - one older dogs would immediately be washed from training for, because it is too much of a risk and liability.  So is she treated same as they would be? Do I just cut the loss and let her go too?  There are other concerns, and again while I think I could train past them given time, time is against me and I lack resources, so I find myself falling back to what my gut instinct says, since it was right before. But then I second guess myself and everything about everything.
I didn't want to say anything before I was more certain, but Ember has been having weird quirks and also not always alerting the older she has gotten, too.  Since I was put on this new medication, it has totally screwed up her alerting. I almost faceplanted the other day getting out of bed because she didn't alert ( she has jumped into bed and woken me for similar situation alerts in the past for reference ).  She is more and more unsure on her own legs/feet. I tried trimming nails and foot fur down as much as I can. Maybe will try boots with good grip and just have her always wear those when working from now on. But otherwise it becomes dangerous because she loses her balance and drags me down with her.  I am out of time and have no options to turn to.  The idea that years of freedom she has brought me will end and I will be alone is... well, frightening.

Laugh if you want, but not being able to know if your body is going to decide to have a random heart rate/blood pressure spazz out that causes you to randomly get very sick and pass out, and the only sure thing that has kept that from happening by warning you in advance being your dog....yeah.  That's not even counting the multitude of other issues like random joint dislocations and tissue injury I can get just by walking or standing.  That's why I need a service dog. Otherwise it is tote around a cane, blood pressure cuff meter, and heart rate monitor, extra meds and smelling salt and the like, and hope that I won't actually need them. But if I do, I will have little if any warning at all, before symptoms hit. Few realize how humiliating it is to stagger suddenly and run into random objects or people ( and the glares you get ) , or how helpless you feel sinking down to the floor in a pre-syncope attack where you basically white out/black out ( no vision or hearing), lose consciousness and sense of anything going on around you, how vulnerable that leaves you if you are all by yourself.  That is my life.  Ember ( even Journey and Chakotay ) has made it a million times better over the years she has helped me, kept me safe.  But now what?

I will go back to barely leaving the house, especially since Mike isn't even here.  He'd go out with me places and get me out at least.  I can't ask or expect my aunt or anyone else to do that. Even when Mike and I are living together again. It is such a huge pressure and burden on our loved ones, that is why a service dog is not just a relief to us as handlers, but to our loved ones who worry so much about us and otherwise have to do so much for us without them to help us. Losing that freedom and security is crushing... especially when you tried so hard to have your backup plan all ready, and you knew just what to do and did it; only life had other ideas.  It always does.  Never works out the way we hoped it would.
lwdoodle

ER Visit, Trigeminal Neuralgia

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.
lwdoodle

Physical Therapy, Autoimmune Flair Stuff

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.
My Mind Escapes Me

Autoimmune Flairs Suck

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 Mind Escapes Me

Disability Claim Denied, Appeal Time

The Social Security Administration denied my Disability claim.

Despite the overwhelming evidence I submitted.  Probably because they didn't bother reading any of it. Not surprising. Their job is to deny everyone.

Time to appeal and fight back.  It'll go to hearing before a judge. I knew it would happen this way, I was expecting it.  My current plan is to represent myself. I have already been formulating a best method of approach. I will probably be contacting people to request testimonies and witness statements as evidence for the court case.
I will need help and support through this difficult process. My life depends on this having a positive outcome. That may sound dramatic, but it is the truth. Without aid, I have nothing.  I am out of options.
lwdoodle

New Service Dog Fundraiser

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