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.

Waiting to hear back on a referral to see a Neurologist and Pain Specialist, probably also ENT doctor. Hoping that I can finally get the MRI I have been waiting years for. Depending on what they find, there might be some treatment options to help with the Trigeminal Neuralgia as far as injecting the nerve or other procedures. Getting the injection in my wrist tendon is painful enough. I can't even imagine how much an injection to a facial nerve is going to hurt. They seriously better gas me to do it, because I know for a fact I will feel this through any local or topical they use on me, and it will trigger my neurocardio stuff in a bad way. Feeling like a skewered piece of meat as a giant needle is jabbed into your jaw socket. Awesome! http://s-media-cache-ak0.pinimg.com/originals/70/9b/8e/709b8e8d182f1a67b93791021d65a6d0.gif

Thank you to everyone for their thoughts and concern over me having to go to the ER yesterday. ER finally confirmed what I have suspected for a while - I have Trigeminal Neuralgia (TN). And it is probably directly caused by my Sjögren's Syndrome. They gave me a new medication that tries to target TN nerve pain, and it was finally able to break through the agony late last night/early this morning. I went to bed with the lower left side of my face swelling ( inflammation related ), and when I woke up today the entire left side of my face was swollen and eye watering from the puffy around it, making it hard to see out that side. Using an ice pack on it, so will see if that helps reduce the swelling. Otherwise I am stable, still in pain but new med is helping. Follow up with primary doc and Neurology Monday. I am a zombie, will be while getting used to this new med. Recap on what led to this point: I was in so much pain, I hadn't been able to sleep for days ( worse than normal ) because the pain always gets insanely worse at night. I have an extremely high tolerance for pain these days, and my Gaba med normally takes enough edge off that I can "ignore" it ( just suffer through it ). On the second day it was getting to where I couldn't tolerate it anymore. Aunt tried to help by getting me all sorts of ice/heat packs and OTC stuff to dull pain. It got so bad that night/early morning that I almost called an ambulance ( my aunt was asleep and she can't drive at night so only way I could have got to ER is that way or call cab and I was worried Medicaid would not cover ambulance ride and had no way to verify at 2am ). It was weekend, no way to speak with Medicaid people to see what was covered, I just decided to suffer through it. On the third day of insane pain I went through my entire daily dose of Gaba in 3.5hrs and it did nothing. I knew it would only get worse again come evening and I didn't think I could deal with it again without wanting to destroy something from how much it hurt. For pain to hurt me bad enough to make me give in and go to the hospital or ER on a weekend, you know it is seriously bad. So neighbor took me that evening since aunt can't drive at night ( thanks again so much! ) and dropped me off. The EJGH staff was AMAZING. First person we were met with was security, and he stopped me when he saw Ember.... I was seriously ready to destroy someone/something at that point from the severe pain and I was having worried flashbacks of the horrible experience I had several years ago with the security douchebag at LSU hospital ER trying to deny me access if I didn't show him "proof" Ember was a real service dog ( this is against the law ). Thank the gods, this lovely gentleman was far better trained and considerate. He noticed her vest and the patches clearly defining what she was, smiled and said nevermind and told me to go ahead. I heard other hospital staff whispering as we wandered past, all saying "its a service dog" to each other, sounding as relieved she was the real deal as I felt that they recognized what Ember was. They were tons more professional and knowledgeable. That's why I chose to use EJGH general practice doctors for my care, and their conduct in the ER only reaffirms I made the right choice. Compared to the LSU ER horror, getting in to the EJGH ER was quick and rather painless. I was worried it would be crowded on a Saturday evening, and while there were enough other people, the staff had a nice system set up for intake and directing patients. They brought me to an exam room in a wheelchair to avoid me going full syncope due to the pain I was in, worried to make me walk that far down the hallways. I was thankful for that. Ember got to show off what a well trained dog she was and that made her happy. She's been so worried over me the past few days. The nurse helped me into the hospital bed and Ember took her place beside it to wait. I got to watch some HGTV while waiting for the doctor. We don't have live cable anymore so it was a treat to watch. The wait for the doctor was brief. She went over my history and current symptoms, I explained I had experienced this problem numerous times before but this was about the worst it had ever been. After a quick examination she agreed based on my history that Trigeminal Neuralgia was most likely responsible, probably directly caused by my Sjögren's causing irritation/swelling/pressure against the nerve bundles somehow. She wrote me a new prescription to try Carbamazepine, got an additional referral to Neurology for me, told me to follow up with my primary Monday, and that was that. They discharged me with paperwork and took me to wait for a cab in the lobby, and were kind enough to make the call for me and inform them I had my service dog with me. It was while waiting I noticed some tightness in my face on the left side, the effected side. I was still in a ton of pain and rather out of it, but realized after poking at it gently that it felt like swelling, and not realizing it was there before I got a nurse to ask the doctor. Unfortunately since they had already discharged me, it meant I would have had to have gone through the whole intake process again, and my cab driver showed up at that time. Not wanting the poor gentleman to wait or have come out to get me for nothing, I decided it was probably from my Sjögren's attacking the glands or something. I have had milder swelling where the salivary glands are before, figured that was it and decided it wasn't worth the trouble to wait around for them to likely not do anything else for me anyway. Couldn't be medication related because I hadn't started the new medicine yet, so clearly it was inflammation. I figured if it got worse, I could go back. The cab driver was very nice and considerate, thought Ember was just amazing. He called her a Rougarou ( Louisiana folklore / French for Werewolf ) when we first got in and told his dispatch he had "Miss Brittney and her Rougarou". That made me all sorts of happy and geeky, and when I responded showing I knew what the term meant, he was just as delighted. It was a pleasant drive home with good conversation, as much as I was limited to talk at the time. Much thanks to Metry Cab and Mr. Jim! My aunt was able to drive me to the 24-hour pharmacy just down the block, since it wasn't too far and well lit with street lights. Had to wait forever for the new med to be filled. Finally got home. Took meds. Became a zombie. Finally got some rest. Took me way too long to write this so it makes sense. The end.

Well, seems like I got my wish for cooler weather. But along with the sudden change came a flareup of astronomical proportions. Everything is ANGRY. Migraine triggers with aura and halos, ocular distortion and blurred vision. I moved wrong and my lower back and hips aggroed and went out aaaand the icing on it all, my De Quervain's Tenosynovitis has flared up so bad I will probably need to get another corticosteroid injection. But at least it's a little cooler out. It's nice. But it would be nicer if my body didn't behave like it was the end of the world every time the weather changes. Trying to be extra careful about how I move, but I refuse to let it slow me down again after I was just starting to recover from the last flare. Lots of Gaba and pain creams all over. I shall smell of menthol! Excuse me while I go electrocute myself with my TENS.

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.

This week has been utterly insane in the amount of flail worthy happenings.

One thing after another, little things adding up at first, and then some big things that left me cursing Murphey's Law.


Hard Drive Crash

The icing on that cake was one of my main hard drives just suddenly... dying. It was from my old system, along with another drive that I thought actually had problems and was cautious not to put anything important on, even naming it "iffy drive". But nooope, it is still working for the moment.

Instead the drive I had all my Steam games, saves, mods, etc on and a plethora of other stuff I hadn't fully copied ( I was running out of room on my portable drive -- which also might be going bad )....all poof! No warning. It was fine when I went to bed, woke up the next day and tried to access something from it and got an error that the content didn't exist at that location. Which made me click on something else, getting the same error... my heart sinking as I opened my system info and the hard drive was no longer listed.

It sucks, but it's not as bad as some hard drive crashes I have had. I didn't lose every single thing. That only happened once when I was younger and first getting into computers, and after that, I religiously backed up everything multiple times if I could. Because, with my luck, this sort of thing always happens. Mike was kind enough to order a new hard drive to replace it, as part of my birthday present. I need it for art stuff and Skyrim and Fallout offer me some happy when I am not able to do anything else.

Anyway, the drive came yesterday and I went to install it. Rebooted. Nothing. No new drive showing. Which led to a hours of troubleshooting to conclude that thanks to Murphey's Law, I received a brand new hard drive that was DOA.

Seriously, what are the chances? I am sending it back for a replacement. We're hoping it is only that the new drive was also dead. Otherwise the only other possibility is a motherboard problem. With this brand new motherboard in this new system. Which is going to make me flail to epic proportions because going through the warranty replacement process for that, having to take the whole computer apart and basically rebuild it and reinstall Windows... nope. Not looking forward to that at all.


Osteopenia Confirmed, Dental Blarghs

In medical news I am still waiting to hear from SSA. Saw my Rheumatologist yesterday, and he did mention he'd just gotten something from SSA and hadn't had a chance to see what it was yet. So we'll see what happens with that. I told him about my fall and ankle/shin injury and how I was still having pain from it. He wrote me a prescription for some sort of topical that is different from the one for my wrist.

He also changed my Gabapentin prescription due to some issues I have had with the low income charity pharmacy giving me a hard time refilling it this week (because I blew through a 3 month supply in a month due to increasing problems with my teeth and jaws) and I had actually run out. It's not a medication you can just stop taking cold turkey. I had to argue with them and beg to have their staff ask my doctor there to give me enough to cover until I could see my Rheuma this week, since I wouldn't be able to get an appointment soon enough with her. My teeth/jaw have gotten so bad I actually had to finally resort to putting stuff in the food processor to make it more manageable since I can't really chew much of anything with my damaged teeth, without feeling excruciating pain. Nerve pain is horrid and unforgiving.

I showed my Rheumatologist that Mayo Clinic radiology report that the fill-in doc ( who took over when my awesome doc left for his fellowship) totally fucked up on. He confirmed it does show Osteopenia in my lumbar spine. Though at first he didn't see it, and did the same thing I think the Mayo doctor did. The hip values were okay and the info runs together. He glanced right over it until I pointed right at it and he went back and more carefully read the values and went "Ahh, yep. Osteopenia." So he wants me to get a bone density scan done as soon as I can, which will be when the Medicaid expansion hits hopefully in July. It could be what's partly causing my lower back problems. Plan is to get lab work done to see if my blood calcium levels are abnormal/high without the supplement. See if there is any change in the spine scan, and go from there. Just hope another two months or more doesn't make a huge difference on top of the 3 years I didn't know. Everyone makes mistakes. It just sucks when a doctor does it and it could risk such a damaging and life changing condition becoming worse from not knowing soon enough. Same reason I need to get that MRI done to rule out MS and some other neurological concerns based on certain symptoms I have had.


More later.

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

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.

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.