leopardwolf: (My Mind Escapes Me)
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
leopardwolf: (Default)
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.
leopardwolf: (Default)
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.
leopardwolf: (Default)
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.
leopardwolf: (Default)
The Rottie Unfortunately Diva ( an affectionate nickname we gave her ) the Rottweiler puppy didn't work out. After further evaluation and working with her, it was obvious that she just didn't have the right characteristics for assistance dog work. She's still a great little puppy full of potential. but she'd make a better family dog, which is exactly what she will be. With the help of the woman I got her from, we contacted someone else who had responded with interest in the puppy after I had taken her. They are a family of Rottie enthusiasts who have had them all their lives, and it was clearly a perfect match. Some things are just meant to be. New Puppy Afterwards I did come across another puppy. This one was admittedly younger than I am normally comfortable with taking a pup for evaluation, but the mother dog had stopped nursing the litter and they had been taken by the owner's daughter to care for and find homes for. The daughter has experience with animal rescue and rehab, so the pups were in good hands and well adjusted for such a young age. The new puppy is a Labrador ( Chocolate ) / Great Pyrenees mix, who is currently six weeks old. She passed the temperament test and startle recovery test far better than I expected. She has a beautiful personality and is very willing to stay engaged. She is a confident little puppy sponge. She is playful and curious, and has potential. The only thing I am uncertain of is if she will be large enough as an adult. Hoping there is a mega growth spurt coming soon. We are playing the name game to see what fits her best. Some names up for consideration: Keala ( Pathfinder, the path ) Raksha ( protection, nurture, pathfinder symbology ) Jakara River Aina ( Joy, Forever, Celtic/Finnish ) Jera Seeker Rain / Rainy Amaya ( Night rain, Japanese ) Zephyr Another Dog So Soon? Something I feel I should say for those who don't know me well enough. Some might look at this as me playing "musical puppies" and think it callous of me. I want it to be understood I don't make any of these decisions lightly. My animals are my family. In the case of these dogs I am evaluating and "trying out" for lack of better phrasing, I get just as attached to them as I am to my animals that have been lifelong companions. The difference in the end however is that I can't let those emotions rule my judgement, if I know that animal is not a good fit for the work I need it to be able to do. I love and respect the animals. I can't force them to be something they are not. I need a very special type of dog, with a very special personality and abilities to adapt to things that most dogs would want to avoid. I need a special dog that will ignore all those pressures and just enjoy working with me and going places with me as my partner. Assistance dogs are considered medical equipment, not pets. Realistically I need to look at it that way and remind myself I can't keep them all, as attached as I get to them through this process of attempting to owner train my new service dog partner. It makes letting them go that much harder. Even if it doesn't work out, I always make sure the dog is going to a good, responsible home, and I keep in touch with and follow up to be sure everything works out. The same as I have always done for any animals I have rescued and fostered over the years. I have seen too many people who owner train use dogs that really should not be working any form of public access, for one reason or another. It is not fair to the dog to try and force it to be something it is not. Doing so would set a bad example on me as a trainer, and be a poor representation of the assistance dog communities as a whole. That is why I am being as selective as I am. Because it is the right thing to do, and it is necessary to ensure my dog is not a liability in public.
leopardwolf: (Default)
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.

Moar Flares

Friday, September 30th, 2016 08:35 pm
leopardwolf: (Default)
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.

Am I back yet?

Tuesday, July 26th, 2016 10:10 pm
leopardwolf: (My Mind Escapes Me)
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.
leopardwolf: (My Mind Escapes Me)
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.
leopardwolf: (My Mind Escapes Me)
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.
leopardwolf: (My Mind Escapes Me)
This week has been utterly insane in the amount of flail worthy happenings.

One thing after another, little things adding up at first, and then some big things that left me cursing Murphey's Law.


Hard Drive Crash

The icing on that cake was one of my main hard drives just suddenly... dying. It was from my old system, along with another drive that I thought actually had problems and was cautious not to put anything important on, even naming it "iffy drive". But nooope, it is still working for the moment.

Instead the drive I had all my Steam games, saves, mods, etc on and a plethora of other stuff I hadn't fully copied ( I was running out of room on my portable drive -- which also might be going bad )....all poof! No warning. It was fine when I went to bed, woke up the next day and tried to access something from it and got an error that the content didn't exist at that location. Which made me click on something else, getting the same error... my heart sinking as I opened my system info and the hard drive was no longer listed.

It sucks, but it's not as bad as some hard drive crashes I have had. I didn't lose every single thing. That only happened once when I was younger and first getting into computers, and after that, I religiously backed up everything multiple times if I could. Because, with my luck, this sort of thing always happens. Mike was kind enough to order a new hard drive to replace it, as part of my birthday present. I need it for art stuff and Skyrim and Fallout offer me some happy when I am not able to do anything else.

Anyway, the drive came yesterday and I went to install it. Rebooted. Nothing. No new drive showing. Which led to a hours of troubleshooting to conclude that thanks to Murphey's Law, I received a brand new hard drive that was DOA.

Seriously, what are the chances? I am sending it back for a replacement. We're hoping it is only that the new drive was also dead. Otherwise the only other possibility is a motherboard problem. With this brand new motherboard in this new system. Which is going to make me flail to epic proportions because going through the warranty replacement process for that, having to take the whole computer apart and basically rebuild it and reinstall Windows... nope. Not looking forward to that at all.


Osteopenia Confirmed, Dental Blarghs

In medical news I am still waiting to hear from SSA. Saw my Rheumatologist yesterday, and he did mention he'd just gotten something from SSA and hadn't had a chance to see what it was yet. So we'll see what happens with that. I told him about my fall and ankle/shin injury and how I was still having pain from it. He wrote me a prescription for some sort of topical that is different from the one for my wrist.

He also changed my Gabapentin prescription due to some issues I have had with the low income charity pharmacy giving me a hard time refilling it this week (because I blew through a 3 month supply in a month due to increasing problems with my teeth and jaws) and I had actually run out. It's not a medication you can just stop taking cold turkey. I had to argue with them and beg to have their staff ask my doctor there to give me enough to cover until I could see my Rheuma this week, since I wouldn't be able to get an appointment soon enough with her. My teeth/jaw have gotten so bad I actually had to finally resort to putting stuff in the food processor to make it more manageable since I can't really chew much of anything with my damaged teeth, without feeling excruciating pain. Nerve pain is horrid and unforgiving.

I showed my Rheumatologist that Mayo Clinic radiology report that the fill-in doc ( who took over when my awesome doc left for his fellowship) totally fucked up on. He confirmed it does show Osteopenia in my lumbar spine. Though at first he didn't see it, and did the same thing I think the Mayo doctor did. The hip values were okay and the info runs together. He glanced right over it until I pointed right at it and he went back and more carefully read the values and went "Ahh, yep. Osteopenia." So he wants me to get a bone density scan done as soon as I can, which will be when the Medicaid expansion hits hopefully in July. It could be what's partly causing my lower back problems. Plan is to get lab work done to see if my blood calcium levels are abnormal/high without the supplement. See if there is any change in the spine scan, and go from there. Just hope another two months or more doesn't make a huge difference on top of the 3 years I didn't know. Everyone makes mistakes. It just sucks when a doctor does it and it could risk such a damaging and life changing condition becoming worse from not knowing soon enough. Same reason I need to get that MRI done to rule out MS and some other neurological concerns based on certain symptoms I have had.


More later.
leopardwolf: (Default)
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.
leopardwolf: (Default)
Disability Stuff

This month is flying by. Have had so much going on with finalizing my filing with the SSA. A few aggravations along the way, but those were made up for by going in to drop off paperwork for SSDI and unexpectedly getting to apply for SSI without needing an appointment as I originally thought I would. Everything sort of fell into place just right. It is all done, and now the waiting game. Hoping for the best, but expecting the worst. I did a lot of reading and research into the process, and spoke with others who went through it. I spent the last year compiling *everything* from my medical records and digging up old documents for FMLA and similar, and writing thoroughly (30+ pages worth) explaining everything in depth and fine detail. With everything else I have done to prepare, I think I have a strong case. Burden of proof is all on me, and I think I have done everything I possibly can. I probably presented the materials much more thoroughly than most people do.


CPL / Service Dog Stuff

Speaking of flying. I fly out this coming week to New Jersey. Going to drive out to Pennsylvania for a CPL support class, where I will have a chance to meet service dog teams from CPL's program. Looking forward to meeting the people and their canine partners who I already know, in person rather than just online. Looking forward to meeting new people and dogs too. Hoping I'll get to interact more with the staff and ask everyone there all sorts of questions. We also have plans to go to a trade show while I am there. Hoping to find some resources and business connections for future investments. Lots of excitement planned, just have to find a way to make it all a reality. One step at a time.


Back And Dental Stuff

My back is feeling a bit better, and almost "normal" again. Hoping it stays that way. I ordered an ortho brace online and have been wearing it as needed to avoid further stress or injury. I found out I have Osteopenia in my lumbar spine. I came across an old radiology report while gathering files for SSA that I hadn't seen before, from just before we moved from Minnesota. Supposedly my old doctor in Minnesota didn't bother to tell me because she didn't feel the overall average of everything added up on the test was out of the ordinary enough. But the radiologist clearly marked it as Osteopenia. Seriously, *any* kind of bone density loss can be a bad thing, *especially* if it is in your SPINE. You have a duty to tell someone that, especially when they are taking medications that are known to *leech calcium* which puts them at increased risk. *Especially* *especially* after you told them to *stop taking their calcium supplement* because their blood serum calcium level was higher than normal. Even not taking it anymore it is still abnormally high. Not to mention the medical diagnoses I have gotten since then and how they'd relate to something like low bone density in the spine. I have to get another bone density scan as soon as I can somehow afford it ( add that to the list with the MRI I really need ) and pray 3+ years not knowing and being off calcium supplements hasn't caused more damage and I can start taking more direct preventative measures to improve or at least prevent further loss. Had some horrid snarky issues with my teeth ongoing and once again looking at needing oral surgery. Trying to find somewhere to get it done under full sedation. It's insane how difficult it is to find something like that, and worse when you don't have any coverage for it.


Otherwise things are okay as they can be. Taking it one day at a time and focusing on the good stuff. Hope everyone is doing well.

Back Gone Out

Tuesday, March 1st, 2016 08:50 pm
leopardwolf: (Default)
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.
leopardwolf: (Default)
(TLDR Version) I went and met with trainers and staff at Canine Partners. I had a chance to work with some of their dogs in the special mobility harnesses they use. They think I'm a good candidate for a service dog through them. I have been added to their waiting list. They're going to start looking for a dog partner that matches my needs. So excited! Now I just need someone who can come with me and stay during the month of team training.



If you'd like to help, please consider donating to the fundraiser and share it:

http://www.youcaring.com/brittney-steptoe-428674


= = = = =





The hotel we stayed at. Funny enough the decor was almost identical to the one we stayed at years ago for training when we worked for Verizon. We had our geek-on with Fallout 4 111 hoodie and Pipboy bag, and Firefox bag. Ember completes the set as Dogmeat ( her nickname ).











Ember laying in her famous "dogball" position at the hotel the morning of the CPL visit. She was minding her own business idly watching us. Then I said "Watch me" to her.






Creek behind the hotel. It was dark when we arrived, but we swore we heard water. Past the parking lot was vast pitch blackness. We found a rock and threw it, to moments later be rewarded with ther ker-SPLOSH sound of water. This is what we found the following morning.






The drive over wasn't too bad. I was playing with my new phone and a holder I got for extended range for photos and video. Maybe pictures with me in them will be less rare now that I can more easily take them myself. Ember sits weirdly and cutely when riding in vehicles.






Sitting at the CPL office waiting to be called over for the client interview. We were a little early. Taz the office cat kept us company and the staff was friendly. I didn't want to be rude by aiming my phone at everything, plus they have privacy policies like doctor's offices do. So behold, Ember and my braces.






We met with the trainers for my client interview. They had 6 or 7 of their own dogs present between the different rooms, and you'd have never known it without seeing them. We settled in and they asked me a lot of questions and we went over various details about their dogs and program. I got a chance to meet and work with two of the dogs directly, whose names were Amber and Moose. This allowed the trainers to see how we moved together, and let me try out their special mobility harness. I basically need a dog around Moose's size that moves at Amber's speed. I asked them if it was okay to snap this picture while we waited for them to get their dogs ready.


Ember was uncertain what to make of all those labs and a doodle present. She was a little concerned when I handed her over to Mike and stepped across the room to work the other dogs, not understanding why it wasn't her helping me. My body was acting up, and Ember alerted during the interview and again when I started to get up to work with the CPL dogs. My meds hadn't quite kicked in so I was hurting and my neurocardio quirks had me riding my personal roller coaster. Thankfully I managed not to fall or run into anything and my joints didn't give out on me in any embarrassing ways, so I think I did pretty good. All the dogs got treats at the end and everyone was happy.


Next we went over to the kennel area for a quick tour and to meet some of the other dogs on site. I decided it was best to leave Ember in the car and use my cane, so she wouldn't get over stimulated by having to ignore the 20 or so dogs in the kennel run and they wouldn't be overly excited by her presence. I didn't get a chance to take any pictures in there as I was too busy keeping myself in an upright position and listening to the trainer showing us around. I had a chance to do some interacting with the dogs, and play the "whoever stays quiet gets a yum" game. Many of them were fresh from their puppy raiser homes. The kennel was actually more empty than normal because a lot of the dogs had gone home with volunteers for the upcoming holiday. So we only got to see a small fraction of the dogs they normally have coming and going at any given time. Overall a very nice facility and the dogs are obviously well cared for.

It was a really nice experience. I'm thankful that CPL was able to accommodate me and schedule a visit early since I was already in the area, and that we found out with enough time to change my flight home. It all fell into place just when it needed to. Huge thanks again to CPL trainers and staff for helping make it happen!

They are having a graduate support class in March that also lines up perfectly with a trade show we want to go to, so we're making plans for me to fly out for both.


Overall, they think that I am a good candidate to receive a service dog from them. I have been added to their waiting list. They're going to start looking for a dog partner that matches my needs. So excited! Now I just need someone who can come with me and stay during the month of team training.

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LeopardWolf - Lhunpaurwen - Lhunie

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