Tags: ehlers danlos

Stargazing Lhunie - SyMara

On Life And Dental Emergency Stuff

Checking in again. Trying to be better about doing it and write more regularly. But don't want to burden anyone with any more negativity than already exists in the world, so I don't talk about half the stuff that does happen.

Still pretty raw and numb over losing both my Aunt and Ember. It has been rough, for the lose itself, and the millions of complications each loss created. Finally managed to get a box of tissues from the store and had a good long and hard cry. Trying to cry a less and not feel sad when I remember.  Trying to celebrate them and remember all the happy times. Tried not to cry while writing this - didn't succeed.

Otherwise not much has changed for us, despite the world gone crazy. Mike working from home and me disabled and staying home majority of the time, we already tried to avoid going out in public much before the outbreak.  Only problem was the increased difficulty of getting anything we ordered online or for store pickups, which we regularly used before everyone started doing it. At first everything was out of stock everywhere. I think the stores are starting to catch up to some degree. but it still sometimes takes multiple orders to snag everything we need, especially the most in demand products.

Been having trouble with my broken teeth and jaws again. It has gotten pretty bad, and I discovered that no one around here accepts the adult Medicaid I have. Not even regular dentists. So I literally would have to go 3hrs+ for any dental treatments of any sort, for it to be covered and not have to pay out of pocket. That is absolutely insane and unacceptable.  Why is dental care not considered as important and part of medical?  Sorry you don't have any teeth or can't eat anything, sucks to be you!  Being able to eat and have healthy jaw structure to easily speak and perform other daily activities, nope, not an important quality of life factor at all.  That seriously needs to change.

I have been miserable for 5yrs + trying to get my dental and jaw issues fixed, just getting worse over time. The pain has been so unbearable at times, I have been suicidal. So many times I literally thought about taking a pair of my jewelry pliers and scalpel to pull them myself. Just to make the pain stop. The amount of pain and related side effects I endure from the numerous exposed nerves and broken teeth, amplified by my neurological and pain sensory disorders, has left me unable to function a majority of the time, even with nerve blockers and pain meds.

I am not sharing this to upset anyone or make anyone feel bad. Just that I think people should be aware things like this happen to others and are not widely recognized like they should be. Until they are, the system will not be forced to change. No one should be forced to live this way, for years, just because they can't afford proper treatment.

These providers shouldn't be able to get away with denying someone care just because they don't want to accept Medicaid. Especially in an emergency situation like mine, with abscessing, infected teeth. People on Medicaid are normally the most vulnerable and at risk, many with little or no income, who desperately need help and like with my own situation, try as they might to improve their life situations, constantly get screwed by the system. It is disgusting and makes my blood boil in a rage I cannot properly express in words.

Anyway, enough of that. I hope that all of my friends out there are safe and well during these strange times.  Please continue to stay safe in the "better safe than sorry" sense.  Wash hands, wear gloves and masks, and treat it seriously. You might not be effected by it. But people like myself, my mother who is having cancer treatment, and my grandmother who is in her 90s are at a higher risk.  People like us could get it because someone else was selfish and careless thinking everything is "back to normal".  So just be smart and cautious and considerate of other people, and encourage everyone you know to do the same, so we can all get through this as safely as possible.
Stargazing Lhunie - SyMara

Ember Crossed Over

A bright new star shines in the sky tonight. Ember crossed the Rainbow Bridge this morning.  We knew she didn't have much longer, but didn't expect it to be so sudden.  She had been improving over the last week, and seemed more like her old self the past few days. She passed peacefully in her sleep at home. March 5th would have been her 14th birthday.  I feel like I didn't do enough for her, compared to all she did for me as my first assistance dog. Ember is in a better place now, no longer in pain.

She will always be with us. Energy cannot be lost. It simply changes forms. Ember dog had a metric ton of energy, the kind that doesn't just cease to exist.  She wanted nothing more than to be as close as she could and make you as happy as she could. Gentle,kind soul. Thank you for everything. We love you. Rest easy now.


" We'll be alive again in a thousand blades of grass, and a million leaves; we'll be falling in the raindrops and blowing in the fresh breeze; we'll be glittering in the dew under the stars and the moon . . . "                 -  Philip Pullman

Lhunie Floof - Foxfeather

Doing Okay

Hello everyone.  How are you all?  I am as okay as can be. The usual here, trying to keep my body from misbehaving. Doing what I can here and there as I am able. Physical therapy stuff. Fixing dislocated joints. The weather flip flopping back and forth from warm to cold doesn't help. Trying to adjust food eating ability with progressively worsening dental and jaw conditions. Not having any front teeth except few on bottom is making it very difficult.  But not much can be done.  Laughing it off as better than dieting methods because it drastically limits what I can eat. There is other stuff happening, but I am choosing not to talk about it here.  Otherwise everything is as okay as can be.  Stay warm and cozy, and be well.

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.

Nerve Conduction Study

Had a nerve conduction procedure today. Insanely painful when they started needling the muscles in both arms. Almost triggered pain syncope response.  Carpal Tunnel Syndrome confirmed in both wrists.  Not a surprise, its been there for years. Just wish someone would have ordered the testing sooner.

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

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!


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.

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.