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.

Facial Nerve Injections?

Waiting to hear back on a referral to see a Neurologist and Pain Specialist, probably also ENT doctor.  Hoping that I can finally get the MRI I have been waiting years for. Depending on what they find, there might be some treatment options to help with the Trigeminal Neuralgia as far as injecting the nerve or other procedures.  Getting the injection in my wrist tendon is painful enough. I can't even imagine how much an injection to a facial nerve is going to hurt.  They seriously better gas me to do it, because I know for a fact I will feel this through any local or topical they use on me, and it will trigger my neurocardio stuff in a bad way.  Feeling like a skewered piece of meat as a giant needle is jabbed into your jaw socket.  Awesome!

http://s-media-cache-ak0.pinimg.com/originals/70/9b/8e/709b8e8d182f1a67b93791021d65a6d0.gif

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.

ER Visit, Trigeminal Neuralgia

Thank you to everyone for their thoughts and concern over me having to go to the ER yesterday.

ER finally confirmed what I have suspected for a while -  I have Trigeminal Neuralgia (TN). And it is probably directly caused by my Sjögren's Syndrome.

They gave me a new medication that tries to target TN nerve pain, and it was finally able to break through the agony late last night/early this morning.

I went to bed with the lower left side of my face swelling ( inflammation related ), and when I woke up today the entire left side of my face was swollen and eye watering from the puffy around it, making it hard to see out that side.  Using an ice pack on it, so will see if that helps reduce the swelling.

Otherwise I am stable, still in pain but new med is helping. Follow up with primary doc and Neurology Monday.  I am a zombie, will be while getting used to this new med.

Recap on what led to this point:

I was in so much pain, I hadn't been able to sleep for days ( worse than normal ) because the pain always gets insanely worse at night.  I have an extremely high tolerance for pain these days, and my Gaba med normally takes enough edge off that I can "ignore" it ( just suffer through it ).  On the second day it was getting to where I couldn't tolerate it anymore. Aunt tried to help by getting me all sorts of ice/heat packs and OTC stuff to dull pain.  It got so bad that night/early morning that I almost called an ambulance ( my aunt was asleep and she can't drive at night so only way I could have got to ER is that way or call cab and I was worried Medicaid would not cover ambulance ride and had no way to verify at 2am ).  It was weekend, no way to speak with Medicaid people to see what was covered, I just decided to suffer through it.

On the third day of insane pain I went through my entire daily dose of Gaba in 3.5hrs and it did nothing.  I knew it would only get worse again come evening and I didn't think I could deal with it again without wanting to destroy something from how much it hurt. For pain to hurt me bad enough to make me give in and go to the hospital or ER on a weekend, you know it is seriously bad.  So neighbor took me that evening since aunt can't drive at night ( thanks again so much! ) and dropped me off.

The EJGH staff was AMAZING. First person we were met with was security, and he stopped me when he saw Ember.... I was seriously ready to destroy someone/something at that point from the severe pain and I was having worried flashbacks of the horrible experience I had several years ago with the security douchebag at LSU hospital ER trying to deny me access if I didn't show him "proof" Ember was a real service dog ( this is against the law ).  Thank the gods, this lovely gentleman was far better trained and considerate. He noticed her vest and the patches clearly defining what she was, smiled and said nevermind and told me to go ahead. I heard other hospital staff whispering as we wandered past, all saying "its a service dog" to each other, sounding as relieved she was the real deal as I felt that they recognized what Ember was. They were tons more professional and knowledgeable.  That's why I chose to use EJGH general practice doctors for my care, and their conduct in the ER only reaffirms I made the right choice.

Compared to the LSU ER horror, getting in to the EJGH ER was quick and rather painless.  I was worried it would be crowded on a Saturday evening, and while there were enough other people, the staff had a nice system set up for intake and directing patients. They brought me to an exam room in a wheelchair to avoid me going full syncope due to the pain I was in, worried to make me walk that far down the hallways.  I was thankful for that.  Ember got to show off what a well trained dog she was and that made her happy.  She's been so worried over me the past few days.

 

 

 

 

 

 

 

The nurse helped me into the hospital bed and Ember took her place beside it to wait. I got to watch some HGTV while waiting for the doctor.  We don't have live cable anymore so it was a treat to watch.  The wait for the doctor was brief. She went over my history and current symptoms, I explained I had experienced this problem numerous times before but this was about the worst it had ever been. After a quick examination she agreed based on my history that
Trigeminal Neuralgia was most likely responsible, probably directly caused by my Sjögren's causing irritation/swelling/pressure against the nerve bundles somehow.  She wrote me a new prescription to try Carbamazepine, got an additional referral to Neurology for me, told me to follow up with my primary Monday, and that was that.  They discharged me with paperwork and took me to wait for a cab in the lobby, and were kind enough to make the call for me and inform them I had my service dog with me.

It was while waiting I noticed some tightness in my face on the left side, the effected side.  I was still in a ton of pain and rather out of it, but realized after poking at it gently that it felt like swelling, and not realizing it was there before I got a nurse to ask the doctor.  Unfortunately since they had already discharged me, it meant I would have had to have gone through the whole intake process again, and my cab driver showed up at that time.  Not wanting the poor gentleman to wait or have come out to get me for nothing, I decided it was probably from my
Sjögren's attacking the glands or something. I have had milder swelling where the salivary glands are before, figured that was it and decided it wasn't worth the trouble to wait around for them to likely not do anything else for me anyway.  Couldn't be medication related because I hadn't started the new medicine yet, so clearly it was inflammation.  I figured if it got worse, I could go back.

The cab driver was very nice and considerate, thought Ember was just amazing.  He called her a Rougarou ( Louisiana folklore / French for Werewolf ) when we first got in and told his dispatch he had "Miss Brittney and her Rougarou".  That made me all sorts of happy and geeky, and when I responded showing I knew what the term meant, he was just as delighted.  It was a pleasant drive home with good conversation, as much as I was limited to talk at the time.  Much thanks to Metry Cab and Mr. Jim!

My aunt was able to drive me to the 24-hour pharmacy just down the block, since it wasn't too far and well lit with street lights. Had to wait forever for the new med to be filled.  Finally got home. Took meds. Became a zombie. Finally got some rest.  Took me way too long to write this so it makes sense.  The end.

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.

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.

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.

New Service Dog Fundraiser

My birthday is this week, May 21st.  This is the new service dog fundraiser.  If you have a few bucks to spare, please consider helping.  Pass it along too.  Thank you.

http://www.youcaring.com/brittney-steptoe-570453

Murphey's Law Kinda Week

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.

All Things Medical And Dental

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.

Disability Update

Stage one of Disability determinations completed. I called SSA today and apparently I have a new worker, which explains part of the run around. She confirmed everything with me and told me she'd be submitting my case to their doctors for review tomorrow.

Now waiting to hear back on the medical determination stage. This is the big one, where the longest wait normally is. Cross your fingers, and send tons of positive thoughts and prayers for a positive outcome.  Hoping for the best, expecting the worst.

Disability Determination / SSA Stalling

Quick update. Ankle is still tender but as long as I am not on it too long I can tolerate the pain enough to walk on it for short amounts of time and for short distances. Puppy is doing good, will write more about that in a puppy update I am working on.

Getting increasingly aggravated with the SSA and this disability determination process.  They sent me ANOTHER letter requesting info I already gave them.  This is the third time they have done so.

I filled out the application online and it specifically asked for this info and I filled in the blanks.  Then I also submitted it with the info I gave them to copy in person. All of that info was carefully organized and selected because they had already asked for it, or I knew they would ask for it, so I included it thinking it would help them and make the process more efficient.

So how can you not have it and still be requesting it unless clearly you haven't bothered to actually look through my entire file?

Or you are just wasting time, resources and paper.

The fact that one of my conditions is actually listed on the SSA "auto determination list" should make this entire process totally irrelevant.  But noooope.

Because, government.

Disability, Service Dog, and Medical Stuff

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.

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!

Ember In Manhattan, Canine Partners Client Interview Upcoming

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I'm in New Jersey visiting Mike. Was sort of a last minute trip. He had time to take for vacation and we decided to do it now, because his time was limited and flight prices skyrocket for the holidays. I'm thankful we have a chance to spend time together. Had a chance to go see Jen and Girlie cat and visit with them and have dinner.  Was so nice being able to see them again and love on Girlie.  Went to my first Rangers hockey game at Madison Square Garden in Manhattan. It was an amazing game to see in person. Had a ton of fun.

Took Ember along with us into Manhattan.  She did flawlessly well for such a loud and overstimulating place as the big city and a sports arena can be.  MSG staff were awesome about Ember being along. She got an official MSG ID card and everything.  I have been taking her out with me since I got here, each time we went anywhere to get her re-accustomed to working in public and to see how she'd do with it, before deciding to take her into Manhattan and MSG.  Ember went back to her solid work ethic as if nothing ever changed, even after not working for almost a year. She alerted me during the game when I got distracted by the intense beginning and forgot to take my medicine.  She also woke me at one point when we overslept ( alarm didn't go off ) and I was late taking my meds. Woke up with my heart racing ( yay tachycardia ) from a dead sleep to her on the edge of the bed trying to get my attention. After she woke me and I showed her I took my meds, she went back to doing her own thing.

Ember will probably end up going home with me and be put on an anti-inflammatory to help keep her comfortable while working.  Mike has been pretty unhappy about it because she keeps him company and keeps him sane around here, which I can't blame him for feeling that way.  I wouldn't take her if it wasn't as much of a medical necessity as it is.  Hopefully it will only have to be for a few months.

I was originally supposed to fly home Nov 16th, but plans suddenly changed last minute when I heard back from Canine Partners hours before my flight. Originally I was supposed to contact them when I got home to set up details for me going to their facility for a tour and an interview with the training staff.  But that would have been more money spent to travel there to not even know until after April if I was being accepted as a client.

I told them I could stay if they could somehow work me in, that I'd change my flight home. With the holidays and other things going on, it didn't seem like it would be possible.  The woman who has been helping me got in contact with the training director and they approved it!  I have a client interview with them on December 3rd and will get to work with some of the dogs so they can see what might be a good fit.  I really, really hope that means being partnered with a successor dog is right around the corner.  Maybe I will get lucky enough to be in this coming Spring team training group.

Service Dog Applications Update

As of Friday I heard back from CPL about my application for a new assistance dog.

"Your application is with the trainers.  I want to let you know that Fall Team Training will start Saturday so we are in hyper drive here so the trainers might not get a chance to review the application until after team training.  - Carol"

Fingers crossed this puts me one step closer to being accepted!



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

Disability App Preparations

Apologies for the lapse in presence on and off recently. I have been busy for a little while working on putting together all of this information for my disability application process. Digging through old paperwork to find things to use ( thank goodness I kept it ), collecting and sorting documents from providers.  Just waiting on responses from two doctors and that should do it.  I wrote a ton of things with medical jargon and ICD-10 codes to throw at them. 10+ pages to tell them how all this affects my daily life and ability to function. Hoping "doing the work for them" will strengthen my case some, but not holding my breathe.  I expect I will be denied the first go-round, as that seems like the popular thing for them to do. Will probably be submitting everything before the end of the month.  Anyone interested in reading any of it and giving their input?   Also on that note, would anyone like to write anything on my behalf for me to submit to them?  On why you feel I should be able to finally get this help I needed ( and probably should have asked for ) years ago and why it is more important I have it going forward?  I mean, lets face it. My body is self destructing itself one collagen molecule at a time.  That isn't going to change anytime soon!

Snarky body

My body has been throwing a fit ever since I stopped working Journey.  The more time passes without the help of a dog, the worse I feel.  I haven't really been out anywhere in nearly two weeks but I finally had to go pick up a few groceries. So sore and exhausted afterwards. My hips, knees, back, and ankles are seriously on the warpath and my normal exercises are not helping. Soaking in a warm bath or TENS is only temporary. Gaba helps for breakthrough, but I am having to take it more frequently to control things during the flairs which increases fatigue and cognitive difficulties.  Changes in weather probably aren't helping either.  Migraine keeps coming and going.  I hope one of these organizations will accept me to receive a new assistance dog. Otherwise I am not sure what I am going to do. One day at a time.

Ember - Dog of the Day

Yaaay Ember! She is the Dog of the Day today!


Spreading awareness for assistance dogs and invisible disabilities.



http://dogoftheday.com/archive/2015/August/11.html