leopardwolf: (Default)
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.
leopardwolf: (My Mind Escapes Me)
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.
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: (Default)
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.

Back Gone Out

Tuesday, March 1st, 2016 08:50 pm
leopardwolf: (Default)
So. Much. Pain. I somehow managed to hurt my back over a week ago and could hardly move when it first happened. After a few days of TENSing, pain creams, Gaba, and resting and hobbling in crazy ways to stay comfortable, it finally felt a little better yesterday. Then today I had to go to the dentist. And it hurt, a lot. The numbing agent they use doesn't work on me, and even taking two Gaba before I still felt it ( though probably less than if I had not taken Gaba ). Ember was worried sick as she lay over in the corner watching and I had to reinforce her stay a few times because she was concerned if I was okay and sensed I was in pain and having pre-syncope symptoms. My hip was bothering me earlier from subluxing, but I finally popped it back into place and felt okay for about 30mins after. I don't know if it was tension from the dental appt or having to drive that did it, but now I can hardly move or bend or twist/turn again without horrible pain. Doesn't matter if I sit or stand or lay, still hurts. I have already fallen behind in my schedule for getting stuff done because of it and because of the insane bad weather that passed through this area last week. I am waiting for an ortho back brace to come tomorrow, and hoping it offers some kind of relief or at least support so this damned thing heals. I can't stand not being able to do anything without feeling this kind of pain, on top of the nerve pain I already feel from my stupid teeth. Don't mind me, just need to vent and write about it so I have a record and reminder of it I can look back at later. There is other news medical and back related that may not be good, that I ironically came across while getting everything ready for the disability case. I haven't wanted to say until it's a pretty sure thing, and only a handful of people know about it. I really need to get XRays and an MRI, but this shitty excuse for GNO citycare doesn't cover that kind of thing. Having to wait till June/July or after and pray the Medicaid expansion really does FINALLY go through thanks to the new governor overruling the old asshole's block on it.....it can't come soon enough. I'm not sure if I can wait if this doesn't let up, but I don't really want to have to go through the horrid local ER system like I did before with my wrist and get absolutely no help and waste time and energy I don't have doing so. So in the meantime I will flail ineffectively and smell of menthol as I electrocute myself. Hope everyone else is doing well.
leopardwolf: (Default)
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!
leopardwolf: (Default)
(TLDR Version) I went and met with trainers and staff at Canine Partners. I had a chance to work with some of their dogs in the special mobility harnesses they use. They think I'm a good candidate for a service dog through them. I have been added to their waiting list. They're going to start looking for a dog partner that matches my needs. So excited! Now I just need someone who can come with me and stay during the month of team training.



If you'd like to help, please consider donating to the fundraiser and share it:

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


= = = = =





The hotel we stayed at. Funny enough the decor was almost identical to the one we stayed at years ago for training when we worked for Verizon. We had our geek-on with Fallout 4 111 hoodie and Pipboy bag, and Firefox bag. Ember completes the set as Dogmeat ( her nickname ).











Ember laying in her famous "dogball" position at the hotel the morning of the CPL visit. She was minding her own business idly watching us. Then I said "Watch me" to her.






Creek behind the hotel. It was dark when we arrived, but we swore we heard water. Past the parking lot was vast pitch blackness. We found a rock and threw it, to moments later be rewarded with ther ker-SPLOSH sound of water. This is what we found the following morning.






The drive over wasn't too bad. I was playing with my new phone and a holder I got for extended range for photos and video. Maybe pictures with me in them will be less rare now that I can more easily take them myself. Ember sits weirdly and cutely when riding in vehicles.






Sitting at the CPL office waiting to be called over for the client interview. We were a little early. Taz the office cat kept us company and the staff was friendly. I didn't want to be rude by aiming my phone at everything, plus they have privacy policies like doctor's offices do. So behold, Ember and my braces.






We met with the trainers for my client interview. They had 6 or 7 of their own dogs present between the different rooms, and you'd have never known it without seeing them. We settled in and they asked me a lot of questions and we went over various details about their dogs and program. I got a chance to meet and work with two of the dogs directly, whose names were Amber and Moose. This allowed the trainers to see how we moved together, and let me try out their special mobility harness. I basically need a dog around Moose's size that moves at Amber's speed. I asked them if it was okay to snap this picture while we waited for them to get their dogs ready.


Ember was uncertain what to make of all those labs and a doodle present. She was a little concerned when I handed her over to Mike and stepped across the room to work the other dogs, not understanding why it wasn't her helping me. My body was acting up, and Ember alerted during the interview and again when I started to get up to work with the CPL dogs. My meds hadn't quite kicked in so I was hurting and my neurocardio quirks had me riding my personal roller coaster. Thankfully I managed not to fall or run into anything and my joints didn't give out on me in any embarrassing ways, so I think I did pretty good. All the dogs got treats at the end and everyone was happy.


Next we went over to the kennel area for a quick tour and to meet some of the other dogs on site. I decided it was best to leave Ember in the car and use my cane, so she wouldn't get over stimulated by having to ignore the 20 or so dogs in the kennel run and they wouldn't be overly excited by her presence. I didn't get a chance to take any pictures in there as I was too busy keeping myself in an upright position and listening to the trainer showing us around. I had a chance to do some interacting with the dogs, and play the "whoever stays quiet gets a yum" game. Many of them were fresh from their puppy raiser homes. The kennel was actually more empty than normal because a lot of the dogs had gone home with volunteers for the upcoming holiday. So we only got to see a small fraction of the dogs they normally have coming and going at any given time. Overall a very nice facility and the dogs are obviously well cared for.

It was a really nice experience. I'm thankful that CPL was able to accommodate me and schedule a visit early since I was already in the area, and that we found out with enough time to change my flight home. It all fell into place just when it needed to. Huge thanks again to CPL trainers and staff for helping make it happen!

They are having a graduate support class in March that also lines up perfectly with a trade show we want to go to, so we're making plans for me to fly out for both.


Overall, they think that I am a good candidate to receive a service dog from them. I have been added to their waiting list. They're going to start looking for a dog partner that matches my needs. So excited! Now I just need someone who can come with me and stay during the month of team training.
leopardwolf: (Default)
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.

Jaw Dislocations

Tuesday, October 13th, 2015 07:50 pm
leopardwolf: (My Mind Escapes Me)
So however long ago it was that my jaw got stuck open that one night where I couldn't close it, and had to pop it back in place, apparently my jaw has been dislocated all this time since!

Which must be why the grinding/popping stuff got so much worse, and was hurting more, I could hardly chew or open my mouth fully. It started bothering me real bad the past week or so. I tried flexing and massaging and pushing at the area for some relief. I popped it the other night and had a sharp pain at the hinge area the past few days. Been taking Gaba, and the nerve pain in the jaw hinge finally let up and I noticed today I could chew mostly normal. I was just able to eat a hamburger for dinner mostly normally for the first time in goodness knows how long!! There is still popping sensations like I had prior to the dislocation, but not nearly as frequent or as painful. Trying to be extra careful with it. Fingers crossed it behaves itself.
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)
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.

Dental Dead End

Wednesday, June 24th, 2015 09:42 pm
leopardwolf: (Stargazing Lhunie - SyMara)
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.
leopardwolf: (Default)
A sad story shared in one of the chronic illness support groups I watch. This is the reason why it is so important to be your own advocate. You know your body best. Doctors don't always know everything. This sort of thing is what worries me and so many others dealing with chronic medical conditions that are not fully understood. Something gets missed or brushed off or misdiagnosed, and you can pay for it dearly in the long run. If something had been done sooner, this poor girl may not have suffered near as much as she did.


"A hospital has been forced to apologize to the family of a teenager who died after doctors dismissed her suspicions and told her to get off Google. Her and mothers pleas for her symptoms to be reviewed fell on death ears."



http://www.ntnews.com.au/news/world/teen-bronte-doyne-dies-of-rare-cancer-after-doctors-tell-her-to-stop-googling-her-symptoms/story-fnjbobed-1227402045732

Spoon Theory

Saturday, April 11th, 2015 11:02 pm
leopardwolf: (Default)
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.

================
"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”


================

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory
leopardwolf: (Default)
Good news everybody! ::Saracasm::


I have officially been diagnosed with Sjögren's Syndrome!


======================


---For Those Going WTF Is That?---

Sjogren's (SHOW-grins) syndrome is a chronic autoimmune disease in which your body’s immune system attacks the moisture producing glands of the body.

Sjogren's syndrome often accompanies other immune system disorders, such as rheumatoid arthritis and lupus. In Sjogren's syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first, resulting in decreased production of tears and saliva.

The two main symptoms of Sjogren's syndrome are:
Dry eyes. Your eyes may burn, itch or feel gritty, as if there's sand in them.
Dry mouth. Your mouth may feel like it's full of cotton, making it difficult to swallow or speak.

Some people with Sjogren's syndrome also experience one or more of the following:

Joint pain, swelling and stiffness
Swollen salivary glands (particularly the set behind your jaw and in front of your ears)
Severe dental issues
Skin rashes or dry skin
Vaginal dryness
Persistent dry cough
Chronic Bronchitis
Dry sinuses or sinus issues
Prolonged fatigue

It may affect other organs of the body, including the kidneys, blood vessels, lungs, liver, pancreas, peripheral nervous system and brain.

For more info, see:


http://en.wikipedia.org/wiki/Sj%C3%B6gren%27s_syndrome


http://www.sjogrens.org


http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275


======================


While it isn’t a good thing to have, it is a huge relief I finally have a doctor who is recognizing that there is more than Fibromyalgia at work and trying to help me fix it rather than just masking symptoms with medications.

As of now, I have been diagnosed with two clearly recognized autoimmune disorders occurring on top of Fibromyalgia and my Dysautonomia. Having a doctor acknowledge that is huge. It’s only taken 10 years to get this far.

I asked him about the disability application, and he is totally 100% on board and told me how some of it would work, as far as how he’d get paperwork to fill out after I submitted my application. He renewed my permit, so I now have a permanent disability parking permit. It actually comes with a little ID card here in Louisiana. Apparently some states use it to verify you are the tag owner.

Only thing he didn’t do, which bummed me, is he didn’t give me another shot in my wrist. He said after what happened last time ( me passing out ) he wanted to try something else. So I got a topical instead, which has to be specially compounded and sent to me. I’m hard pressed to think it will work, but I’ll try it before I knock it and beg for the injection again.

I finally have hope that things are taking a turn in the right direction with all this medical crazy I have lived with for years.


I will still need people who are willing to write on my behalf for the disability application. If you already have ( thank you guys again SO much! ), I plan to use those.

If you are willing to write a statement, please let me know.

I’ll be starting this whole process in January, after the holidays.

New Rheumatologist

Friday, July 25th, 2014 08:48 pm
leopardwolf: (Default)
Monday was much better with this new Rheumatologist. It was like a night and day difference compared to the jerk one I saw. This new doctor was considerate and awesome, and so were all the staff.


He actually asked if I had ever applied for disability. He's the first who ever has. It made me feel like I was dreaming. I explained I would have but had gone through so much hell and so many doctors who were reluctant to help with it, that I needed one to support me during the process, and jokingly said by all means he could if he wanted ( most of them have just laughed it off in the past and didn't take it seriously.. wanted me to "wait and see if it got better.." even after dealing with this for over 8yrs )....

He nodded while looking at the paperwork and said "Sure, I'd be happy to".

It took me by surprise, like... did I just hear him right?

He did a full body exam and looked over all the paperwork I brought and asked relevant questions as we went along. He definitely thinks I have severe Fibromyalgia, and he agrees he feels something else is going on causing the other stuff. What, he's not sure. Which I am okay with, because like he said "you can't diagnose something like this in less than an hour". But it was a night and day difference compared to the last guy I saw who blew me off.

One thing I that kinda made me iffy, is that he doesn't believe in seronegative autoimmune stuff. He's one of those doctors of the belief you either have it or do not, but he also said "who is he to argue with Mayo Clinic or any other doctor". So maybe he is willing to be open minded in the event nothing else can be found... I have all the other symptoms, and even showing him a pic I took of a face rash he was like "huh.. that does look a lot like a lupus rash".

Like many doctors who have opened up to the possibility have said "If it looks like a duck, and quacks like a duck...."

During my next visit I plan to bring in some articles I have come across online about seronegative stuff. I am hoping after reading some of them, he might be more willing to consider it possible. In the meantime, I am still keeping my ears open for anyone in the area who is openly accepting of it. As with many other things, the South is behind the curve medically speaking, so it is possible he hasn't seen or heard enough convincing research or talked with other doctors who have clinically treated people for it despite their bloodwork coming back negative, if they persisted with all other symptoms long term.

Funny enough, this guy's office is literally right across the street from the old hospital my mother worked for yeaaars ago, before Katrina. It was weird being back there and seeing how much it all changed.

I actually didn't need a referral for this guy. I called their office when I found it listed online. The doctor I wanted to see had retired, so I saw this guy instead. And amazingly, I got this appt a week out from asking for it. It was a smaller clinic, everyone there staff and all was amazingly nice.

The new doctor is amazing in comparison and seems like he genuinely wants to help figure all this out. He's also helped me find a new general practitioner, which I was also still waiting on with the last clinic since I moved back down here. I have referrals and need to get more testing, but one day with him got me further than months of waiting with the other place.

We'll see what happens.

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