Lhunpaurwen's Ramblings

Still alive. Been really sick on and off multiple times with flairups, including falls and passing out. Started as soon as the temperatures began to get warmer outside. Been borderline heat stroke every day since. Can't get anything done because I overheat too easy, even inside with the AC running full blast. The little energy I have has been totally devoted to preparing for my Disability Hearing at the end of August. I haven't really been online on FB or anywhere else at all since April or May, so if I missed anything major, I apologize. Thank you all for the birthday wishes back in May, they helped cheer me up while I was sick. Hoping it cools off outside soon. I hope all is well for all of you. If I missed anything you want me to know about, please share. I will catch up as I am able to, but probably won't be real active till after my Disability Hearing on August 31st. Positive thoughts and prayers for a positive outcome are appreciated. Wish me luck!

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 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!

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.

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.

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

Nothing like going to the dentist for fillings and to discuss increase in TMJ issues and such, to basically be told you'll need to pay around $12,000+ to get it all fixed in a way that won't fail like all other methods have for you for years. I need implants. Anything else will just fall apart and be a waste of money. The longer I wait, the worse my jaw bones and connective tissue gets, to where it will be bone grinding bone. Even now I am having a hard time eating/chewing and talking, and my jaw has started locking/dislocating. If I don't get it done soon, I'll likely be needing corrective jaw bone surgery in the next few years. I really don't know what I'm going to do. I can't even bring myself to smile anymore. Sometimes I just feel like giving up because things just get more and more broken and there is nothing I can do about it.

Because I "look okay" on the outside, it is hard for people to understand what I deal with on a daily basis with my medical conditions. This is a little something that passes around the various communities and through friends who also struggle with their own problems, that helps describe it pretty accurately.

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"I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.


Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”


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http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory