Lhunpaurwen's Ramblings

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.

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.

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 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.

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!

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

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.

Past week has been crazy. Computer problems. Desktop formatted ( finally! ugh ) and Win7 Pro installed. Been fighting with plethora of updates and reinstalling all of my programs and sorting through files. Stuff with Journey's medical diagnostic still sinking in. Tried to do some shopping runs without him. So insanely exhausted afterwards I could hardly move and hurt worse than normal. Him pulling the cart helps so much. Horribly tempted to keep working with him at least until I get approved for a new dog. Maybe doing so infrequently would be okay, on days I really need it.

Like tomorrow. I had plans to go to the gem and jewelry show. I haven't been in over 10yrs (since we weren't living here), and so I made plans before learning about Journey, to go. My mom and aunt gave me a little spending money and Mike is giving me a little also, so I can pick up some much needed supplies at far cheaper prices than I would pay anywhere else. I was hoping someone would come along with me, but everyone has to work or is otherwise indisposed. I know my limits, and I know I couldn't walk around the crowded convention center alone for that long, without risk of triggering a neurocardio attack.

So Journey is going with me tomorrow. He's been off duty for a week and can't understand why I keep going places without him. It's normally better to ease them into retirement anyway, like I did with Ember. As long as I don't do any full heavy weight bearing things with him ( which I never, ever have ) then it should be safe for us both on a limited basis. Fingers crossed I hear back on these applications soon.

Anything special anyone wants me to look for at the gem and jewelry show? Any specific gems, stones or colors or materials you'd like to see me work with?

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

******UPDATE: Thank you again SOOOOOO much to Emily/Arikla!!! She has generously offered to help cover the expenses for Journey's xrays and testing. Professional curiosity she claims. ;) Geeks will be geeks.******



Took Journey to the vet today. Seems like it might be the worst case scenario. Most likely hip dysplasia or something similar or something else effecting back end. They need to sedate for xrays. Bloodwork also needed to rule out any endocrine/pancreatic issue or any other problems or possible infections.

Got estimate papers from vet and discussed things. Going to be upwards of $720 for everything.

We just don't have that kind of money. I was supposed to bring him back tomorrow, provided we could pull some of the money out of thin air for at least the xrays. But now just thinking of not bothering.

Just assume he's screwed ( if not physically then from behavior quirks he's developed ) and wash him from training and service dog work.

Fundraising to get a service dog through an organization in PA isn't even likely an option either, because of expenses related to actually getting there and hotel to stay if volunteers can't let me stay with them. That would cost anywhere from $3,000 to $5,000 to make a reality. It's really shitty we were forced to move away from Can Do Canines service area and they can't help me.

Save everyone the money and trouble. I'll just carry a cane, blood pressure monitor, and hand grabber around with me from now on and hope for the best.