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.

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.

Service Dog Update Stuff

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 )
Aina ( Joy, Forever, Celtic/Finnish )
Rain / Rainy
Amaya ( Night rain, Japanese )

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.


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.

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.
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.

Preparing For Battle

I have been a little scarce recently. Taking care of medical related stuff.  I am finalizing my Disability/Medicaid application process next week.  I will be going in person with faithful Ember at my side to present my 3inch+ thick folder of medical records and documents, letters of support ( thanks again to those who wrote them ), and fully detailed write-up of my conditions and their effects on activities of daily living and how they adversely effect my ability to work for gainful employment ( lack thereof ) or enjoy activities the way I could before my body decided to try and self destruct.  I am going in fully expecting I will be denied the first time and will have to appeal. They normally almost always deny you the first time, even if you have a metric ton of supporting evidence like I do.  If by some miracle I get approved on the first try, it will be so totally unexpected I will implode from sheer relief and happiness.  I won't hold my breath though.  Thoughts, prayers, luck, and well wishes are greatly appreciated!

Back In Louisiana

Apologies for the delay updating this past month. I ended up staying in NJ longer than expected because I went to meet with a service dog organization for a client interview for a new dog.  I was sick while I was there with a flareup, and came home sick with a sinus infection turned into bronchitis and upper respiratory infection. Went to the doctor and got antibiotics and an inhaler. It's been pretty miserable but I am starting to feel a little better.  That said, I am getting back to work on the projects I left off with and will be sharing progress along the way on Patreon.

Christmas / Yule cards are also on the way, for those who asked or sent them last year, since my whole plot of silly "Christmas in July" sort of got botched, they are actually on time for this year's holiday haha.  I think I'll send another batch randomly at some point too just to make up for it. Because we all need cheer year round!  Hope everyone is doing well.