Lhunpaurwen's Ramblings

Appeals Council threw out my case without even looking at it. They don't care that the judge was openly biased and wrongfully denied me. SSA didn't want to have to pay a 35yr old SSI *AND* SSDI plus back pay owed for both. I had enough work credits through this entire 2yr+ process before my hearing with the judge, but they expired while my case was drug out waiting for a hearing. Thus SSA knew it would prevent me being able to reapply for SSDI after the judge denied me. Now I have to start the process all over. I can only apply for SSI now.

I haven't been online a lot since the end of November or so, mainly because a lot of things have been happening and changing in my life. I had a breakdown of sorts over the holidays and went into self preservation mode. I was in a real dark place, and I am just managing to really pull myself above it where I hope it won't affect my friends or anyone around me that I care about. I can't really talk about part of what happened. All I can say is it mainly revolved around the judge denying my Disability case, for biased reasons. I have filed an appeal with the Appeals Council, and that's all I can really say publicly. If you want to know more, feel free to ask in private. Stress over the Disability hearing and then denial, caused autoimmune flairups from those stress triggers and snowballed. I got pretty sick several times as a result. Also had real bad flairs with my hands and wrists, needed steroid injections in my wrists. Raw skin on my hands has also made it hard to do things. Had several bad Trigeminal Neuralgia flairs where the pain was so excruciating I just didn't want to exist. Like I said, the usual. Had some other things happening. Family stuff. Family illness. Deaths in the family. Just a lot of overwhelming emotional things that happened back to back. I feel horrible that I haven't been able to be there and be supportive for everyone in the way I want to, and in the past was capable of doing. I feel like these shortcomings make me a bad person. I know people have been concerned, not hearing from me. I just wanted to let everyone know I was doing as okay as can be. Just didn't want to be a downer writing about nothing but depressing things, because no one wants to read about that. I have little art and creative things, or geeky science and gardening stuff ( mostly just pictures ) I have been keeping a record of over the months. I just haven't had the energy or presence of mind to process all the photos and upload them yet. I hope to do that soon. Some I have already shared with my Patreons, who I am eternally grateful to and thankful for their continued support and understanding despite my absences and limited capacity to create on the level I wish I could and used to be able to. I am trying. My doctors have agreed that it is beneficial to keep trying, modify and incorporate what I can into my physical therapy exercises and such. Just taking everything day by day. Will start doing some catching up with everyone as I am able to. Hope everyone is doing well.

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!

Still alive. Trying medication adjustments per doc. Still very out of it at points when meds kick in, so may be a bit scarce at times since I make little sense or write weird things when totally medicated. By time I finish, it will have taken me hours just to write and proof read this, like anything I write these days. I think I am just destined to have bad luck with my service dogs in training and any service dog prospects. I was feeding animals this evening. Put my hand in puppy bowl ( as I gave to her ) to encourage her to eat from hand and hands are okay by bowl, something I have always done and normally met with wiggly waggy tails because they get extra good treats in the process. Well tonight she got a wild hair up her ass and decided to growl at me....a freeze/tense, growl warning, go to eat food again sort of way. This is after demand bark/yowl/howling for almost an hour because I was in the other room ( eating my own dinner and getting meds ) and she was in here in her kennel ( Ember was laying to her side quietly). So presumably she was hungry, but still. Not like she was starving for food or ever missed a meal or had to compete with anyone or anything here for her food. She has been doing the demand bark/yowl/shriek since I got her. She has gotten somewhat better ( worse - before extinction? ). I think she learned it from watching the misbehaving pit bull belonging to the ladies I got her from. Then all she had to do was throw a tantrum of her own and I am pretty sure they must have somehow reinforced it, even if unintentional. That was at 5wks/going on 6 wks old I got her She is 7wks now. Not a good sign as far as the growly resource guarding behavior is concerned. For a normal pet dog, I could work around and through it. But it is a very undesirable trait for a potential service dog prospect to have - one older dogs would immediately be washed from training for, because it is too much of a risk and liability. So is she treated same as they would be? Do I just cut the loss and let her go too? There are other concerns, and again while I think I could train past them given time, time is against me and I lack resources, so I find myself falling back to what my gut instinct says, since it was right before. But then I second guess myself and everything about everything. I didn't want to say anything before I was more certain, but Ember has been having weird quirks and also not always alerting the older she has gotten, too. Since I was put on this new medication, it has totally screwed up her alerting. I almost faceplanted the other day getting out of bed because she didn't alert ( she has jumped into bed and woken me for similar situation alerts in the past for reference ). She is more and more unsure on her own legs/feet. I tried trimming nails and foot fur down as much as I can. Maybe will try boots with good grip and just have her always wear those when working from now on. But otherwise it becomes dangerous because she loses her balance and drags me down with her. I am out of time and have no options to turn to. The idea that years of freedom she has brought me will end and I will be alone is... well, frightening. Laugh if you want, but not being able to know if your body is going to decide to have a random heart rate/blood pressure spazz out that causes you to randomly get very sick and pass out, and the only sure thing that has kept that from happening by warning you in advance being your dog....yeah. That's not even counting the multitude of other issues like random joint dislocations and tissue injury I can get just by walking or standing. That's why I need a service dog. Otherwise it is tote around a cane, blood pressure cuff meter, and heart rate monitor, extra meds and smelling salt and the like, and hope that I won't actually need them. But if I do, I will have little if any warning at all, before symptoms hit. Few realize how humiliating it is to stagger suddenly and run into random objects or people ( and the glares you get ) , or how helpless you feel sinking down to the floor in a pre-syncope attack where you basically white out/black out ( no vision or hearing), lose consciousness and sense of anything going on around you, how vulnerable that leaves you if you are all by yourself. That is my life. Ember ( even Journey and Chakotay ) has made it a million times better over the years she has helped me, kept me safe. But now what? I will go back to barely leaving the house, especially since Mike isn't even here. He'd go out with me places and get me out at least. I can't ask or expect my aunt or anyone else to do that. Even when Mike and I are living together again. It is such a huge pressure and burden on our loved ones, that is why a service dog is not just a relief to us as handlers, but to our loved ones who worry so much about us and otherwise have to do so much for us without them to help us. Losing that freedom and security is crushing... especially when you tried so hard to have your backup plan all ready, and you knew just what to do and did it; only life had other ideas. It always does. Never works out the way we hoped it would.

Just when I thought I'd be back and be able to catch up with online interactions, something else comes up. Dealing with things as best as I can. Most of it doesn't warrant expending the energy to mention. Some of it meh. Some of it sad. Most recent being the loss of one of my aunts to medical complications. It was sudden and unexpected, and still hard to accept. The circumstances around it have made me reflect on my own health issues. I have been in some bad mindspace, so I chose not to burden others with it. Not any different than any negativity I have shared in the past, so why sound like a broken record.

In better news, the Medicaid expansion finally hit. I got everything with it straightened out, I think. I went and saw my eye specialist and my rheumatologist. It was finally decided since we'd tried everything else with limited results, it was time to try adding immunosuppressants. I have been taking Plaquenil and Restasis since then. I wasn't able to until now without insurance, because the Restasis alone would have been over $500 per monthly supply out of pocket, similar to the problems I had with getting my Cymbalta before it went generic.

There is no generic for Restasis, so I am having to fight for a prior authorization for it. The insurance allowed the first month purchase to go through so I would have it, so kudos to them for thinking of the patient in these situations. Now I just hope they are reasonable to approve the prior auth since it is literally the only medication of its class and kind so there are no alternative treatments available to substitute. I also saw my new primary and she seems pretty awesome. A lot like my awesome Mayo doctor was the first time we met. Getting referrals for lab work and to see an orthopedic specialist, neurologist, and endocrinologist finally, after waiting an eternity. Here is to hoping I can get approvals for a bone density scan and MRI real soon.


Finished gathering, compiling, and submitting all the information for my Disability appeal. My rheumatologist and I sat down and compiled a whole slew of things to throw at them, based on their own listing criteria, and directly quoted those criteria and offered detailed information for a functionality report based on models they use, which should be more than enough medical evidence to support my claim and get approval. Now it is just a matter of waiting again. It could take a year or more before the case is even issued to a judge. Unless someone in the processing department reviews it and sees how blatantly it is that I meet listing level criteria and should have been approved the first time around. Jump. Through. Hoops. Makes my fur bristle the more I have to conform to their inadequate process.

The benefit of waiting is that it gives me that much more time to research and be thoroughly prepared for the hearing when the time comes. I did speak with a helpful woman in their support department who sent me some information for legal assistance for low/no income individuals. I plan to utilize it if I am able to. It's not the same as retaining a private attorney, but I'm sure I can learn something either way if I qualify to use it.

Back to catching up on things I missed.

Stage one of Disability determinations completed. I called SSA today and apparently I have a new worker, which explains part of the run around. She confirmed everything with me and told me she'd be submitting my case to their doctors for review tomorrow.

Now waiting to hear back on the medical determination stage. This is the big one, where the longest wait normally is. Cross your fingers, and send tons of positive thoughts and prayers for a positive outcome. Hoping for the best, expecting the worst.

Back from New Jersey. The trip was short but went really well. We went to a trade show to see equipment and other things. After that we drove out to Pennsylvania and stayed the night at the hotel near CPL, then attended the support class the next day. It was nice to see how they run things and meet others who were already paired with CPL dogs. My friend Carolyn and her CPL mobility dog Cherry came and we finally got a chance to meet in person and after the class go and have amazing nom nom sushi, yay! Ember was waiting out in the car with Mike during class so I could work with one of the CPL dogs. I got to work with a beautiful male yellow labrador named Diesel. Great dog, great personality. He was already paired with someone though.







During the class he got a little restless at points and I'd reposition him and give him a down-stay command, but he'd eventually move again and come toward me. I wasn't sure if it was alerting behavior or not, since there was a younger female black labrador with another lady near us who also kept turning toward us a little restless. She also kept staring at me and whining, but I thought it was because I had my treat bag and was rewarding Diesel for good behaviors, which is why I also thought he was restless, wanting more treats! Turns out Diesel was alerting to my neurocardio symptoms, and when I glanced at the clock I realized I was due for my medicine. He alerted within the same time frame Ember normally alerts when I am due for it. It was really awesome having a dog I don't even know alert to me. I mentioned the behavior from the black lab that kept focusing on me, and they told me she was from one of their lines known to alert so they were glad to know she was displaying the behavior and they'd follow up on it.

I asked them some questions about the whole process since I am on the waiting list, and was curious to know how many other medical alert dogs were in the making since Diesel was already paired. They told me unfortunately all the dogs that do medical alert are currently paired with their new partners, and none of the dogs in the kennel rotations right now are displaying the right behaviors frequently enough if at all to make a solid medical alert dog. Which basically means since there are other people already ahead of me on the waiting list, I probably wouldn't be getting paired with a dog this year. Then there is also the problem of finding someone to attend the entire month of team training with me.

Which leads to my next post, which will discuss that, and a little something else that happened as a result.

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.

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!