Lhunpaurwen's Ramblings

About time a decent story about Dysautonomia was done locally. This is one of the conditions I have. It causes my heart rate and blood pressure to do weird things, and causes me to pass out under certain conditions, feel extremely dizzy, weak and fatigued all the time, digestive issues, and other things. Watch the video and please share. It might find someone who needs it. http://www.fox8live.com/2018/11/07/dysautonomia-battle-with-an-invisible-illness/

To clarify something with the service dog fundraiser I have been doing, because a friend pointed out some confusion. We were having a discussion about me needing to come up with $120ish for a training class and I was saying I'd have to raise the money. Trying to be helpful she made the comment "At least you have the $700 from the service dog fund if you need to use that".

I actually do NOT have that much. That is just the total that was raised from the time that I first got Journey until the time I had to rehome him (almost 2yrs worth). This was before I made the choice to apply to CPL and everything. That money at the time was specifically raised to go toward his training and care, or toward service dog related expenses, and it did. Some of it went to help cover some expenses during the two trips I took to visit CPL.

In reality I only have around $380 remaining currently. $250 of that is tied up in a revolving line of credit (LOC) with the bank. This was done to hold the money for the service dog fund purposes but to also help improve my credit, since I had medical debt and have been unemployed. It works sort of like a credit card. I can spend up to that amount, but I have to "pay it back" at the end of the month. Until I close the LOC anuyway. When I do, I get that $250 back. But I don't plan on doing that anytime soon because it really has helped improve my credit so far.

The remaining $130ish is the actual "spending money" I have right now specifically for service dog or CPL related things. The rest of it is gone. It was spent back when I had Journey for his care and supplies, and some of it was just spent recently for the new things I needed for Chakotay.

This is why I keep sharing the link to the fundraiser. I am in limbo waiting to hear back from SSA on Disability, so unless I sell art or creative things, a commission, or something from my Etsy store, I don't have any other source of money coming in unless someone is kind enough to donate.

Did the "amount raised" display on the fundraiser confuse anyone else ( make you think that was how much I still had)?

Should I start a brand new fundraiser at $0 amount so people realize I really don't have $700 already toward the cause?

I hate that I even have to ask for help, I'd much rather people buy my art, crafts, jewelry, or commission me so they get something in return.

But aside from dog training and animal psychology related training and sharing my knowledge, that's the only other thing I can do, and all of it is limited by my health problems at any given 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

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.

Yaaaaay! We got the application paperwork for PAWS With A Cause. If they approve us, we may be able to have a field trainer travel to help us with training, similar to what Ember and I did with Can Do Canines. Either way, being approved through their program will mean I will have the option to get a successor dog through them when needed in the future.

Having Raynaud's Syndrome / Vasospasm in your chest HURTS. A lot. That is all.

Really not liking the new Budweiser commercial with the puppy and Clydesdale made for the Super Bowl this year. The original commercial of the series was nice and uplifting. This one is just poor taste. It once again makes wolves and coyotes out to be the stereotypical "bad guys". Not cool at all.

This is something I have lived with since I was a child. Always on the outside looking in, always alone even when surrounded by people. Never really being understood by anyone, because I don't think the same way humans think. I love the simple, beautiful things in life. I love the deep thinking and inspiring. I see with eyes unclouded.


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1. The inexperience of feeling truly understood.

Old souls can be seen as strange people because they often hold unconventional ideals and standards of living. They often feel a sense of separation from themselves and the “real world” because things like obtaining great wealth, owning a lot of expensive possessions, and other traits of living a materialistic lifestyle aren’t really an interest to them. In a world fueled by consumerism this can seem kind of weird to most people. Having a different set of expectations and ideas about living can make it hard to feel like anyone truly understands you and what drives you in life.
2. People don’t understand how easygoing and forgiving you can be at times.

Old souls tend to have a philosophical viewpoint about life and look at things on a larger spectrum. What does this mean? When problems arise and old souls are forced to overcome great obstacles they understand even the hardest moments in life are a chance to learn and become stronger. It’s not that the things that have happened to them haven’t affected them – they have – but they look at their struggles as just a brief moment in the overall journey of life. They can find the good in people, in life, in everyday interactions that can seem negative or monotonous to others and that’s where they focus their energy.
3. You can be inhibited by the way you view life.

As you evolve over time your self-awareness increases and you’re able to firmly identify your beliefs about life and this world. The problem with old souls is that often they can see a multitude of possibilities within the spectrum of life and instead of freeing them to create whichever destiny they believe would suit them they instead can become inhibited by the very freedom they’ve established.
4. Making decisions based off of a “feeling” can seem illogical.

Intuition is a subtle, sophisticated language and old souls actively work to become in-tune with the way their body communicates with them. The gut instinct is the most simple and basic level of physical intuition that communicates through yes/no, safe/unsafe messages. We use this the most often when trying to make decisions about people and relationships, both personal and professional. Old souls rely on their gut instinct to guide them in their decision making and other people often won’t understand the logic when you tell someone you just “have a feeling” about something or someone.
5. You can be seen as a loner.

Old souls are after long-lasting, impactful, meaningful relationships in all aspects of life. They’d rather have a few close friends than dozens of acquaintances they hardly know but this can give the impression they’re some sort of social outcast. Old souls, like introverts, would rather focus their social energy on people they can have deep conversations with and they loathe being pressured to socialize more or make more friends.
6. You’re unsure if you’ll ever find your home.

One of the most universal problems with being an old soul is the inability to ever really feel like you belong with others. Whether you travel all over or have lived in the same town your entire life it can be difficult for old souls to feel like they have a home in this world. They’re constantly seeking kindred spirits and a place where they truly belong.
7. The desire for solitude can impact your relationships.

Being an old soul can be an isolating existence at times. You need your solitude to sit and reflect on life and to recharge when you’ve completely exhausted yourself but sometimes this can be frustrating to your friends and family. They love you and they want to be around you. Unless they also draw their energy from themselves and understand the need to be alone from time to time this can create issues when they really want you to hang out with them and you’d rather be at home reading a book
8. Your idea of fun is different than others.

Old souls find simple pleasure in small moments in life, and activities that are a bit old-fashioned are what they’re naturally drawn to. Going on a weekend drive through the country, heading to the 24-hour diner at midnight on the other side of town with the best breakfast within a 50-mile radius, getting milkshakes and watching the sunset over the pier, spending the evening writing hand-written letters to your friends that live across the country – these are the kinds of things you love doing. The problem is finding other people who like to engage in the same types of old school fun.
9. You learn the brutal realities of romanticizing life and love.

Old souls have a very romantic way of seeing the world and often when the world doesn’t live up to their expectations they can be emotionally impacted by this. Although old souls are idealistic, eventually they learn to also try and see the more realistic side of things.
10. You find it hard to disengage in conversation with strangers.

Something about old souls makes other people want to come up to them and talk. It’s like you’re sitting on a train or bench somewhere, a person sits down next to you, and 20 minutes later you know their entire life story. Others are drawn to speak to you but it can be difficult to turn others away or to remove yourself from the conversation because you feel some sense of duty to be a sounding board for this stranger that felt compelled to talk to you.



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From:

http://thoughtcatalog.com/koty-neelis/2014/12/10-common-problems-old-souls-experience-at-least-once-in-their-life