Lhunpaurwen's Ramblings

About time a decent story about Dysautonomia was done locally. This is one of the conditions I have. It causes my heart rate and blood pressure to do weird things, and causes me to pass out under certain conditions, feel extremely dizzy, weak and fatigued all the time, digestive issues, and other things. Watch the video and please share. It might find someone who needs it. http://www.fox8live.com/2018/11/07/dysautonomia-battle-with-an-invisible-illness/

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!

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 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.

Just when I thought I'd be back and be able to catch up with online interactions, something else comes up. Dealing with things as best as I can. Most of it doesn't warrant expending the energy to mention. Some of it meh. Some of it sad. Most recent being the loss of one of my aunts to medical complications. It was sudden and unexpected, and still hard to accept. The circumstances around it have made me reflect on my own health issues. I have been in some bad mindspace, so I chose not to burden others with it. Not any different than any negativity I have shared in the past, so why sound like a broken record.

In better news, the Medicaid expansion finally hit. I got everything with it straightened out, I think. I went and saw my eye specialist and my rheumatologist. It was finally decided since we'd tried everything else with limited results, it was time to try adding immunosuppressants. I have been taking Plaquenil and Restasis since then. I wasn't able to until now without insurance, because the Restasis alone would have been over $500 per monthly supply out of pocket, similar to the problems I had with getting my Cymbalta before it went generic.

There is no generic for Restasis, so I am having to fight for a prior authorization for it. The insurance allowed the first month purchase to go through so I would have it, so kudos to them for thinking of the patient in these situations. Now I just hope they are reasonable to approve the prior auth since it is literally the only medication of its class and kind so there are no alternative treatments available to substitute. I also saw my new primary and she seems pretty awesome. A lot like my awesome Mayo doctor was the first time we met. Getting referrals for lab work and to see an orthopedic specialist, neurologist, and endocrinologist finally, after waiting an eternity. Here is to hoping I can get approvals for a bone density scan and MRI real soon.


Finished gathering, compiling, and submitting all the information for my Disability appeal. My rheumatologist and I sat down and compiled a whole slew of things to throw at them, based on their own listing criteria, and directly quoted those criteria and offered detailed information for a functionality report based on models they use, which should be more than enough medical evidence to support my claim and get approval. Now it is just a matter of waiting again. It could take a year or more before the case is even issued to a judge. Unless someone in the processing department reviews it and sees how blatantly it is that I meet listing level criteria and should have been approved the first time around. Jump. Through. Hoops. Makes my fur bristle the more I have to conform to their inadequate process.

The benefit of waiting is that it gives me that much more time to research and be thoroughly prepared for the hearing when the time comes. I did speak with a helpful woman in their support department who sent me some information for legal assistance for low/no income individuals. I plan to utilize it if I am able to. It's not the same as retaining a private attorney, but I'm sure I can learn something either way if I qualify to use it.

Back to catching up on things I missed.

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.

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.

So. Much. Pain. I somehow managed to hurt my back over a week ago and could hardly move when it first happened. After a few days of TENSing, pain creams, Gaba, and resting and hobbling in crazy ways to stay comfortable, it finally felt a little better yesterday. Then today I had to go to the dentist. And it hurt, a lot. The numbing agent they use doesn't work on me, and even taking two Gaba before I still felt it ( though probably less than if I had not taken Gaba ). Ember was worried sick as she lay over in the corner watching and I had to reinforce her stay a few times because she was concerned if I was okay and sensed I was in pain and having pre-syncope symptoms. My hip was bothering me earlier from subluxing, but I finally popped it back into place and felt okay for about 30mins after. I don't know if it was tension from the dental appt or having to drive that did it, but now I can hardly move or bend or twist/turn again without horrible pain. Doesn't matter if I sit or stand or lay, still hurts. I have already fallen behind in my schedule for getting stuff done because of it and because of the insane bad weather that passed through this area last week. I am waiting for an ortho back brace to come tomorrow, and hoping it offers some kind of relief or at least support so this damned thing heals. I can't stand not being able to do anything without feeling this kind of pain, on top of the nerve pain I already feel from my stupid teeth. Don't mind me, just need to vent and write about it so I have a record and reminder of it I can look back at later. There is other news medical and back related that may not be good, that I ironically came across while getting everything ready for the disability case. I haven't wanted to say until it's a pretty sure thing, and only a handful of people know about it. I really need to get XRays and an MRI, but this shitty excuse for GNO citycare doesn't cover that kind of thing. Having to wait till June/July or after and pray the Medicaid expansion really does FINALLY go through thanks to the new governor overruling the old asshole's block on it.....it can't come soon enough. I'm not sure if I can wait if this doesn't let up, but I don't really want to have to go through the horrid local ER system like I did before with my wrist and get absolutely no help and waste time and energy I don't have doing so. So in the meantime I will flail ineffectively and smell of menthol as I electrocute myself. Hope everyone else is doing well.