leopardwolf: (My Mind Escapes Me)
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
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.

Moar Flares

Friday, September 30th, 2016 08:35 pm
leopardwolf: (Default)
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.
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: (My Mind Escapes Me)
The Social Security Administration denied my Disability claim.

Despite the overwhelming evidence I submitted. Probably because they didn't bother reading any of it. Not surprising. Their job is to deny everyone.

Time to appeal and fight back. It'll go to hearing before a judge. I knew it would happen this way, I was expecting it. My current plan is to represent myself. I have already been formulating a best method of approach. I will probably be contacting people to request testimonies and witness statements as evidence for the court case.

I will need help and support through this difficult process. My life depends on this having a positive outcome. That may sound dramatic, but it is the truth. Without aid, I have nothing. I am out of options.
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)
Quick update. Ankle is still tender but as long as I am not on it too long I can tolerate the pain enough to walk on it for short amounts of time and for short distances. Puppy is doing good, will write more about that in a puppy update I am working on.


Getting increasingly aggravated with the SSA and this disability determination process. They sent me ANOTHER letter requesting info I already gave them. This is the third time they have done so.

I filled out the application online and it specifically asked for this info and I filled in the blanks. Then I also submitted it with the info I gave them to copy in person. All of that info was carefully organized and selected because they had already asked for it, or I knew they would ask for it, so I included it thinking it would help them and make the process more efficient.

So how can you not have it and still be requesting it unless clearly you haven't bothered to actually look through my entire file?

Or you are just wasting time, resources and paper.

The fact that one of my conditions is actually listed on the SSA "auto determination list" should make this entire process totally irrelevant. But noooope.

Because, government.
leopardwolf: (Default)
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.

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: (Lhunie Floof - Foxfeather)



I'm in New Jersey visiting Mike. Was sort of a last minute trip. He had time to take for vacation and we decided to do it now, because his time was limited and flight prices skyrocket for the holidays. I'm thankful we have a chance to spend time together. Had a chance to go see Jen and Girlie cat and visit with them and have dinner. Was so nice being able to see them again and love on Girlie. Went to my first Rangers hockey game at Madison Square Garden in Manhattan. It was an amazing game to see in person. Had a ton of fun.

Took Ember along with us into Manhattan. She did flawlessly well for such a loud and overstimulating place as the big city and a sports arena can be. MSG staff were awesome about Ember being along. She got an official MSG ID card and everything. I have been taking her out with me since I got here, each time we went anywhere to get her re-accustomed to working in public and to see how she'd do with it, before deciding to take her into Manhattan and MSG. Ember went back to her solid work ethic as if nothing ever changed, even after not working for almost a year. She alerted me during the game when I got distracted by the intense beginning and forgot to take my medicine. She also woke me at one point when we overslept ( alarm didn't go off ) and I was late taking my meds. Woke up with my heart racing ( yay tachycardia ) from a dead sleep to her on the edge of the bed trying to get my attention. After she woke me and I showed her I took my meds, she went back to doing her own thing.

Ember will probably end up going home with me and be put on an anti-inflammatory to help keep her comfortable while working. Mike has been pretty unhappy about it because she keeps him company and keeps him sane around here, which I can't blame him for feeling that way. I wouldn't take her if it wasn't as much of a medical necessity as it is. Hopefully it will only have to be for a few months.

I was originally supposed to fly home Nov 16th, but plans suddenly changed last minute when I heard back from Canine Partners hours before my flight. Originally I was supposed to contact them when I got home to set up details for me going to their facility for a tour and an interview with the training staff. But that would have been more money spent to travel there to not even know until after April if I was being accepted as a client.

I told them I could stay if they could somehow work me in, that I'd change my flight home. With the holidays and other things going on, it didn't seem like it would be possible. The woman who has been helping me got in contact with the training director and they approved it! I have a client interview with them on December 3rd and will get to work with some of the dogs so they can see what might be a good fit. I really, really hope that means being partnered with a successor dog is right around the corner. Maybe I will get lucky enough to be in this coming Spring team training group.

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)
Yaaay Ember! She is the Dog of the Day today!


Spreading awareness for assistance dogs and invisible disabilities.


http://dogoftheday.com/archive/2015/August/11.html




TMI Tuesday

Tuesday, June 16th, 2015 11:49 pm
leopardwolf: (Default)
Having Raynaud's Syndrome / Vasospasm in your chest HURTS. A lot. That is all.

Closer To Answers?

Thursday, April 23rd, 2015 09:19 pm
leopardwolf: (Default)
A followup on my last posts with somewhat good news about the visit with my Rheumatologist. The appointment went better than expected when I mentioned suspecting EDS as the underlying cause for my Fibromyalgia, Dysautonomia, and years of other issues. It still panned out how I thought it might with him wanting to refer me to see a genetic specialist. The problem standing in the way is affording the genetic testing and related expenses since I don't have insurance and the city care I have isn't accepted at most places.

His clinic is going to call around and try and find a genetic clinic to refer me to that is either covered by the city care I have, or see if they can find some sort of charity or grant thing to help cover expenses of genetic testing and seeing the geneticist. In the meantime he's ready to go to bat for me for the disability application and even noted his feelings in favor of it for me in my record officially after we sat and discussed everything with him in more detail.

It's more frustrating because as I tried to explain to him, the hypermobility type of EDS doesn't show on genetic testing. He kept saying that EDS does. But everything I have read, and people have commented saying the testing isn't as important if you suspect EDS-H because testing can't confirm you have it as there is no identified genetic marker. So I am not sure if he misunderstood me, or if he is not fully informed and not wanting to admit it, which is why he'd rather refer me out than give the physical criteria tests.

I'm just very worried about having to go spend $300+ for new patient fees and office visits and either end up getting blown off like in previous experience because "the genetic test didn't show anything/came back normal" ( keep in mind this test costs thousands and I don't have insurance), after spending so much money for years on other crazy medical tests and procedures of everything in and on my body.

The one thing giving me some shred of hope is people have said a good geneticist shouldn't waste time or suggest wasting money if they don't suspect vascular EDS ( which thank the gods doesn't seem as likely in my situation ). So it'll just turn into another round of going and spending another $300+ to have a doctor look at me and say "Yep, you have it".

Now I just need to find an EDS specialist locally, in case whatever the Rheuma's office is trying to set up falls through.

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

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LeopardWolf - Lhunpaurwen - Lhunie

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