Tags: sjogrens

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.
My Mind Escapes Me

Femur Funny

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.

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

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.
lwdoodle

Moar Flares

Well, seems like I got my wish for cooler weather.  But along with the sudden change came a flareup of astronomical proportions. Everything is ANGRY. Migraine triggers with aura and halos, ocular distortion and blurred vision. I moved wrong and my lower back and hips aggroed and went out aaaand the icing on it all, my De Quervain's Tenosynovitis has flared up so bad I will probably need to get another corticosteroid injection.  But at least it's a little cooler out.  It's nice. But it would be nicer if my body didn't behave like it was the end of the world every time the weather changes.  Trying to be extra careful about how I move, but I refuse to let it slow me down again after I was just starting to recover from the last flare. Lots of Gaba and pain creams all over. I shall smell of menthol!  Excuse me while I go electrocute myself with my TENS.
lwdoodle

Updates, Nirding

I return. Sort of.  I have had a horrible go at it with reoccurring flair ups of my autoimmune issues. No thanks to the stress of having to jump through more hoops to get a little help.

It is better explained here, with neat pictures of my crazy flesh!

http://www.patreon.com/posts/handy-hands-5871180


It is finally letting up enough where I can think somewhat clearly and function enough to venture on here and see what everyone is up to.
I have a ton of little updates to make here or there, mostly passing comments about random things that have happened.
That includes a very random and rapid visit from my friend, the good doctor Jenn.
She brought along her friend and fellow doctor Abby ( who was moving to Louisiana, yay! ) and Abby had with her an awesome gyr-burd.
The nirds taught me great wisdom of avian ways. Shenanigans were had, great photos were captured ( envy of Jen and her snazzy super lens ), tasty gator was partaken and good company shared by all. It was an awesome day and evening full of laughs and animal geekery that I have been dying for.

They got to meet Ember and Chakotay and experience the silly that is service dogs given a "relax and say hi" command.  Chakotay did very good for his first lengthy outing working alongside Ember with all sorts of crazy distractions ( like birds! ).  It was also his first experience doing a long and boring down/stay under a restaurant table.

It was totally worth the recovery time from all the activity afterwards.  They went to the French Quarter the following day before leaving town, and while I wish I could have too, there is no way I could have gone along and managed to keep up. Especially not in the scorching heat and humidity.
Other stuff happened. I found a baby possum skeleton, I saved a fledgling Blue Jay in epic fashion, I have been training with my dorky dogs when my body allows, and I continue to battle medical conditions and fight for the aid I need.  With the Medicaid expansion I am finally getting access to immunological medications and other treatment options, which we hope will better control symptoms.
I think I covered all the main highlights.
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.