Disability Update

Tuesday, November 6th, 2018 09:51 pm
leopardwolf: (Default)
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.
leopardwolf: (Default)
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.

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.
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: (Lhunie Floof - Foxfeather)
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
leopardwolf: (Default)
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

Saturday, October 3rd, 2015 07:35 pm
leopardwolf: (Default)
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.
leopardwolf: (Default)
Wow! You guys are awesome! Since the first post, we have already raised $80 and have more on the way for the fundraiser. Please consider donating. Even a $1 goes a long way, because if 50 people donate a $1, that is another $50! If you can find it in you to pass on that Starbucks for one day, toss that $5 our way!

Share and encourage people to check it out and share as well. Remember, you guys are helping me keep my independence and safety by doing this!

Thank you so much!


PayPal is leopardwolf@gmail.com

or


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


or



http://www.gofundme.com/steptoe-sdfund
leopardwolf: (Default)
This fundraiser is to help me acquire a new service dog for mobility assist and medical alert purposes.



I suffer from chronic medical conditions, including a genetic connective tissue disorder known as Ehlers-Danlos, and conditions that affect my autonomic nervous system, my own causing neurocardiogenic issues with my heart and blood flow.



My service dogs are life savers. They have been trained to sense certain chemical changes and alert me to them, to keep me out of danger. They help me navigate daily life safely.



Journey, my current service dog, has hip dysplasia. Which basically ends his short career as a mobility assist and medical alert service dog. Losing him as my lifeline and partner is a huge loss of freedom for me in my daily life.



I now need to apply through an organization for a new assistance dog. I need to come up with money for the applications fees, which are $25 to $50 per organization. Then wait to be approved and matched with a dog. I need to start a huge fund raising effort to help me get the assistance dog I need, which in the end will likely cost over $5,000.





I don't have the financial ability to owner-trainer another dog myself like I did with Ember (my first dog) and Journey. It took me a year just to find Journey ( after reviewing countless candidates ). It's the risk of owner-training, you might think you find the perfect dog, but something unexpected could always happen.



I can't keep going through dog after dog after dog covering expenses for vet work, training, etc. just to have them not work out and have to start all over again. Which is why I am making the hard decision to turn toward an organization for an already trained dog. Getting one through an organization also means if I have problems in the future, or when the dog is ready to retire, I can get a successor dog through the program.





I will most likely end up approved going through Canine Partners For Life, which is located in Pennsylvania.



I need to travel to their facility for team training, which is a 3 week program. All expenses for travel to get there, hotel, plus transportation while there, cost for food and for admission to places for field trips during team training are my responsibility.



Here is info they give about related expenses coming out of my own pocket:



= = =



To purchase basic supplies for the dog - cost approximately $300-$400.





To travel, at your expense, to CPL for a 3-week, mandatory team training session.





To arrange for your accommodations for the 3-week training session. Cost for hotel and meals are approximately $2000. Free housing with volunteers may be available but not guaranteed.





To arrange and pay for your daily transportation to and from CPL and on field trips for the 3-week training session.







To provide your own meals (breakfast, lunches & dinners) including some field trips out for meals (and for your aide if one accompanies you).







To provide your admission costs for field trips during 3-week training session – approximately $100 to $200 per person (and for aide if one accompanies you).







A requested donation (to be determined by a sliding scale – ranging from $1,000 - $3,000) should be sent to CPL before the start of team training.





Medical Alert students must be accompanied by another person during the entire 3-week team training session. ( *** This applies to me, which means I also need someone to go with me and cover their expenses too )





= = =





This same sort of thing holds true for the other programs I qualify for. I have to travel to their facilities and pay for everything in the process, plus the money for the dog itself. Some organizations are able to offer dogs at no charge to their clients, but none that do service my area, or they do not train dogs to assist with the things I need help with or have other specific requirements for clients that I don't fall under.







I basically have to come up with over $5,000 to get a new service dog, before I can even get the dog.







I am starting that fund raising campaign now, in hopes I will have enough saved by the time I am approved and matched with a dog through one of these programs.







If you want to donate directly to me, my PayPal is leopardwolf@gmail.com



Here are links to fundraisers set both on YouCaring and GoFundMe:


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


http://www.gofundme.com/steptoe-sdfund



You can share those links, this post directly, or both.



I also plan to try to reach out to local charities and businesses for assistance. Either in hopes of sponsorship or that they'd be willing to let me put up donation flyers and collection jars or something similar to help spread awareness and raise the needed funds.





If you are interested in reaching out to businesses or charities in your own area who may be willing to help, if you own a business and would like to help raise funds, or if you would like to help with fund raising through some other means, please contact me at leopardwolf@gmail.com so I can provide you with information on how to do so.





There is no donation too small. We are grateful for any and all financial help in reaching our goal.





Even if you cannot help financially, you can help by spreading word about this and posting it for more people to see. Share it with your family, your friends, and anyone else you think might be interested in helping. Encourage them to pass it along as well.



Feel free to post it to your LJ, FA, Facebook, Twitter, DevArt, Tumblr, blogs, and anywhere else such a post would be allowed.





Thank you for taking the time to read this. Thank you in advance for you consideration, your thoughts, your time and your donations.




Love and light,

Brittney
leopardwolf: (Default)
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




leopardwolf: (Default)
Today was a good day. I finally got the answer I have been waiting so long for. I have Ehlers-Danlos.

The missing link to my medical mystery and what is likely the root cause of the many years of medical problems in my life, from the more current to those reaching back to my childhood.

It was confirmed by a leading geneticist from Tulane Medical's genetics department after a thorough and extensive evaluation by him and his colleagues.
For those not familiar with it, Ehlers-Danlos (EDS) is a genetic disorder that effects collagen. Collagen is the main structural protein found in connective tissues of animals. Literally the "glue" that holds everything in our bodies together. It is found in everything in our bodies; Organs, ligaments, tendons, bones, cartilage, blood vessels, teeth, eyes, skin, everything.


https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome


There are various types of Ehlers-Danlos, some worse and rarer than others. Ehlers-Danlos is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. Some forms can be identified by genetic markers, and some have not yet been identified. It's a lifelong, painful condition with no cure.

Yet I cannot express how relieved I feel to know it is indeed the missing link.

Having leading experts in the genetics field acknowledge my concerns and confirm what I suspected (and questioned years ago to other doctors only to be dismissed)... to finally have some kind of closure and explanation to why it never got better when doctors promised it would.

Going in expecting the worst... to be seen by another doctor who wouldn't listen and would just blame Fibromyalgia despite my clear clinical history. That scenario happened so many times over the years I lost count.

These doctors not only got my medical record ( you'd be surprised how many doctors I have seen who never did or never looked at it fully even when offered ).... and read it. All of it.

I mention something I wanted to be sure they knew ( and wouldn't know unless they read my history) and they responded not only saying they "read that in my file" but then made another random comment based on something else they read (that I had not brought up).... I almost broke down crying right there because it's been so long since I had a medical professional do that. Know me and my full medical history. Which is really sad to say it is not more common.

I knew in that moment it was all worth the fight to get this far.

They listened. We thanked them more than we have ever thanked any medical professional.

Now the battle for disability and Medicare really begins.

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LeopardWolf - Lhunpaurwen - Lhunie

July 2020

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