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To kimk: No my family all lives in Michigan. My next closest relative is in Texas. Thanks for help with, looking I still am, although I’m not really sure if there is any thing else really to treat the epilepsy, though I know there are things for the nerve pain. I request aquatics over drugs, beacuse not being able to ride my bike as much is taking a tole on my muscles,and the water is warm and easyier to on a body than normal physical therepy, so it helps me to gain some strength back too. The only issue with it is my current exhaustion with how fast i tire out, and having a seizure in the pool.
Furtunatly the epi. seizures are under control now, and the non-epi. seizures most usally come with an aura, even if it’s only a few minutes before, anf if feel like I’m gonna pass out, I’d get out anyways, thats the exhaustion, but it precursor’s another aura anyways. If i pass out, i’ll probably have another one, ya know that’s stress on abody.
to dragonmelody- i wouldn’t call Mary so much “qualified” as much as just a really good freind. She’s been on this rollar coaster since my first rental, so she has learned quite a bit about siezures, what to do, and has learned to recognize (when she is watching) when I might pass out or be having an aura, and has litteraly caught me multiple times, even letting me fall on her so I wouldn’t hit my head onthe floor again. So I suppose her qualification would be experiance. And she helped out Wade, her first land lord up till the day he died.
To the other person whose, user I forogt about 30 seconds ago-
thank you, and thanks to every one.I’m gonna be going to church this morning, and then will proabably stay in bed and sleep most of day. My exhaustion is both mental and physical so to much stimulation has a physically tiring effect on me. It makes it hard to paint or draw, as I can only look at the same one for so long, hence doing two painting’s at once at the moment, so I can go back and forth working on various differnt areas, until I’m just too tired to paint at all..
The good news: I had no seizures and did not pass out yesterday!! (but I was also in bed most of day, but baby steps right?)
Another freind might take me out to just drive around for a bit, (i am not driving he is) So that way I can get out without exerting myself too much. I’m glad to have the few poeple I know around, they have sort of become my family..:)
What I wrote, only puts in the past couple years. December 19, 2013 was alsotthe seventh anniversay of my father’s passing, and of my two perants, he is the one I was closer to..I’ll always miss him, but I can never forget the things that happend for the first five years. I fell into a deep deppression and took every moment to lash out at those around me. I gained alot of wieght, became very violent around family, so much that no body wanted to be around me. Mom,jeff and my brother would go out to dinner and movies and stuff, and I’d be left all alone at home, all the time. Life became very secluded, I was admitted to two psychiatric centers, and was arrested twice for fighting with family, even spending three weeks in jail when I was seventeen. I’ll admit it, thats just where I came from and grew from. After that I was given a choice of going to another psych ward for three months, or going to a six month program in montana. It was a really hard choice. I’d never been far from home, and I’d be alone without family for six months. But I had terrible trauma’s from the second one, involving tranquilizers..my dad had always told story’s from he lived in the mountains, and I had never seen them before, and I wanted to make him proud and make things better, so I chose the program. and after that I was in a transtional home for 5 more months, and again, that was another very traumatic experience with a horrible person running the program, but then I found I loved the place I was at, and the mountain, so i decided to stay. When I go back to visit, I feel the pull to go back home to here, so I know that finnally, I found where I belong.
I do have a very long story, and alot of it is kind of sad. But I have come really far from that, and I never, ever want to go back to that dark place I was at. I don’t know many poeple, but the few I do have become my family out here, and I’ll always have family back home, but I just can’t go back there to stay. I don’t belong, and as much as they want me now that I have “changed”, I know they havn’t, and it will never be the same without Dad around, so I’m happy to stay here for the time being. so ya..I am rambling agian..
…see what I mean by writing an inspirational novel on my life?
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comIt sounds like you had some medical “professionals” with questionable medical judgement. I can’t believe some of the stuff they did and said to you before this latest episode. UGH! I hope things move up from here. You’re in my thoughts.
Well I am officially not working anymore. I was terminated this morning, now I will have to see about getting the paper work done..
EDIT, 1/6/14
Hey my Medical Alert ID Bracelet got here this morning!
Heck ya, now I’ll be able to have the neurologist verify it tomarrow at the appointment, I wasn’t expecting it till like friday and then would-of had to wait till the end of the month….
I am also putting in applications for a seizure response dog, but it looks like lists start a year or so out at least..I wish there was a way to do it sooner..With my pretty much daily siezures it would be very fortunate right now..
Oh, but none on saturday, and only 1 yesterday. Little steps! 🙂
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comWe are looking into having me listed as her “Copes Worker”. That is I could actually get paid for helping her out with errands and cleaning and stuff. It will help a bit, but from what we hear it is a bit tricky.
Anyways, I’m really glad I decided to bring her to the other hospital, things are actually getting done now. I used to work at BGH, their staff has never really been to great. Kootinea is much better, and much nicer.
could it be considered “normal”to be having nightmares after all this? I haven’t slept well in days. Woke up twice from bad dreams to find I was actually having the seizures in real time in my sleep, even though it is considered impossible to have non-epi seizures in your sleep. Still got the neurologist boggling over that one..:P
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comcould it be considered “normal”to be having nightmares after all this? I haven’t slept well in days. Woke up twice from bad dreams to find I was actually having the seizures in real time in my sleep, even though it is considered impossible to have non-epi seizures in your sleep. Still got the neurologist boggling over that one..:P
Oh yeah! You’re going through major stress, so that’s totally normal. Some meds also give vivid dreams, not sure if that could be the case.
Read my books! Volume 1 and 2 of A Dragon Medley are available now.
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http://www.sarahjestin.com/feedbacklists.htmcould it be considered “normal”to be having nightmares after all this? I haven’t slept well in days. Woke up twice from bad dreams to find I was actually having the seizures in real time in my sleep, even though it is considered impossible to have non-epi seizures in your sleep. Still got the neurologist boggling over that one..:P
Oh yeah! You’re going through major stress, so that’s totally normal. Some meds also give vivid dreams, not sure if that could be the case.
I just found out that a common side effect of the Keppra is nightmares. My body has in intolerance to the Keppra, so that explains it. I already have had night terrors in the past, so compounding with that I am barely sleeping, I feel like I stayed up all night..last night I had nightmares about waffles all night..
I don’t even like waffles. I don’t I have ever dreams as wierd as these normally. Most of them involve some kind of seizure or work truama. Others involve food. I wake up feeling like I stayed up all night (or most of it) anyways.
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comI have nightmares when my PTSD acts up. The last couple weeks have been “screamers”; the sort where you wake up screaming. Freaks poor Sean out almost as badly as myself… So I’ve been staying up later and later to try to avoid having ’em and just wind up sleep deprived. Sorry your having them… That really sucks…
tdmtdm
OK, back to my pitty party, yes I’m throwing myself a party…
Oh, I am really feeling it this morning. Every joint and muscle aches, and bruises are forming on my knees and bum from kneeling all that time..It was worth it though, to bad he’s melting already..
I found the paper last night from the Keppra that lists SOME of the “possible” side effects….
Side effect that may occur include: Decreased appetite, dizziness, drowsiness, irritability, runny/stuffy nose, sore throat, tiredness or weakness.
You may also experience the following: decreased coordination, extreme drowsiness, dizziness, weakness or tiredness, fever, chills, hallucinations, memory loss, mental or mood changes, trouble sleeping including restlessness, vivid dream, and nightmares, unusual bruising and vision changes. Please see you doctor for a full list of all possible side effects.If you need me I’ll probably be sleeping today, but I did make a quiche to eat this morning, now if I can just remember that I made food in the first place, and them remember to actually eat it….
I have been setting my phone alarm, so I remember my meds and to eat..it helps a little…:P
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comSo an update for those who were following.
Today is January 21. It has been exactly 3 week since I was discharged from the ICU at Kootenai Medical Center. It had been a long three weeks, but on the positive note, it has given me a lot of time to work on Art, and in general at least try to sleep. I nap and snooze a lot, but I am unable to get a full deep sleep.
I have started my Aquatic therapy again, this time mostly for exercise to help me gain my strength back. I am down to about 6-8 seizures a week from 20+, and the Lamictol, which will eventually be my only seizure medication has been raised slightly, and there only two weeks left of the Keppra. In the past three weeks only one of my seizures has been Epileptic, and it was very short, and lucky me, it had an aura this time.
Yesterday I had two, the one that was epileptic and one that evening that was non-epileptic. I had been flashed in the face a few times by the sunlight as people went in and out of the therapy office. I remember a bunch of bright light, and then woke up on a bed in a room to the side. I took me a few minutes to realize where I was and figure out what kind of seizure it was. My thinking was slow and dazed when I woke up,that is how I can tell the difference. With the non-epileptic, I can think, I just have no control. The thinking can only be delayed in a nonepileptic if I pass out from the fatigue or stress of the seizure.
I am off to a slow start at therapy, I have had seizures two of the three visits so far, although the first was my own stubbornness to do more than I should (or could) have, and got out of the pool a few too many stretches later. The epileptic was unrelated to the therapy. I’ve decided I just have to take it slow. As much as I want, my strength isn’t gonna be full up anytime soon.
I am also having a non-invasive reflexive muscular therapy, where the therapist moves me into different positions to reset and relax my very many muscle spindles and feedback loops that have become messed up due to the many traumas not healing in the muscles properly, as well as the seizures. Over time as they are reset, it should help with the nerve pain. When I feel pain, my nerves will fire like crazy. My temperature will rise and dip, and I will feel pain where i haven’t actually been hurt or actually have pain. Like if I stubbed my toe, my body may say my toe hurts, but so does the right of my ribcage, and the side of my back. This is caused by the messed up nerves and my incorrect feedback loops, which then can result in the pinching of a nerve by muscle spindles and nerves misfiring. I pinch the sciatic nerve a lot, and boy do you FEEL THAT ONE!!
So when these muscle spindles tug or pinch a nerve, my brain goes crazy, causing more pain, and more seizures. It will all take time. She can only work on 4-5 at a time, and I have hundreds out of place. But I am not limping as bad on the left, although I still am pretty bad on the right of my hips.
I have began going back to previous media’s. My painting had greatly improved, and becoming almost bed bound has left me with drawing in bed, painting at the table when I am strong enough to support myself, and on occasion, moving all my paint stuff to my bedroom floor so I can support myself on the side of my bed and paint anyways if I feel the need. I have also sold my first canvas painting, and almost done with my second, and finished painting many small ceramic figures, that hopefully I may sell.
I also found out that there are way Mary (laundry2011) can be paid for all the support she has given me, and has continued to do. She has been so helpful, and honestly, if she weren’t around, I wouldn’t be able to live on my own anymore. My does my laundry, helps me cook and clean, and even stays around so I can shower in case I fall. She has supported me when I have had seizures, caught me from falling when I have passed out in the kitchen and such, and even gets my groceries for me, sometimes bringing me and helping me at the store so I can get out of the house a bit. She has been here for 3-5 hours every single day for the past three months, has been there every time I have been hospitalized, and even stayed the night multiple times to watch me if I have had a lot of or a particularly bad seizure.
After a two weeks of many ridiculous and long phone trees, a nurse made it out to my house today for an evaluation. She qualifies to be paid for up to 30 hours a week, and between 10-15 dollars an hour. I am so happy to be able to do this for her. It’s the least I can do. I have very few friends, and when you get hurt or ill, you really learn who will be there. And though she didn’t have to, she was and is. The way we became friends is even interesting.
WARNING, LONG SIDE-STORY:
When I moved into my first rental, I was renting a room at an older friends house (72 year old ex-fire chief), where she was also renting. She worked nights and slept in the day, so I had never seen her till I moved in. We laugh, because the only time we had ever seen each other before, I was living next door in a transitional home, and the owner made me sleep on the sidewalk one night. She came home around 4 am, and as pulled up, I was thinking “who is that strange person going into wades, what a wierdo.”, and later found out she has seen me laying out (it was the last week of october, it snowed a week later) and had thought “who the heck is that wierdo sleeping on Thomas’s sidewalk. It’s cold out. That ‘s a strange person”.
Go figure, we both thought the other weird and would of wanted nothing to do with each other if we had known who the other was. Well, I was alone at wades, had no job and no family. So she offered to take me to here sister’s house for dinner on christmas eve. I had no freinds and would have been alone, so sure, I decided it would be good to meet my house mate. Who would of guess we would almost die in a car accident on the way there. Not to mention an impossible one.
So for those who don’t know sandpoint, we live smack dab in the edge of the mountains. 1 1/2 hours from washington, and 1 1/2 hours from montanta. 3 hours from canada. He sister and cousin live half way to canada, to the north of town. That day she had stopped at Jay’s, her cousin who raised her and where she also lives, and we were then going to go to her sisters from there and would be meeting jay there, he had already left. So we turned towards highland flatts I later found out, and started down a very steep mountain road. One side is a 45* hill going up and the other, a much steeper hill a few hundred feet into a low river. Now this is december in the mountains. It was snowing like crazy, and slick in places. I was quietly playing my handheld video game in the pasanger seat, when I suddenly felt the car lurch forward, spin a 360 around the corner and swerve up the side of the hill. By all logical physics, we should rolled back down. The front left tire caught between two very large rocks the EXACT width of the tire, and we slid back onto the road where her car just stopped in the middle of the road on ice so slick I fell when I got out. We were angled to miss the guardrail, and by all means, even after the first fortunate luck, should of kept sliding into the canyon. The car “just stopped” Scared the **** out of both of us, neither of us said anything and were both dazed as we figured out that we were still alive.
As for the car?
Front license plate was torn off by the rock, along with the base plastic of one bumper, and one tire gained a bent frame, turning a sharp coil of metal into the tire. The tire never blew, Her cousin came, as well as a couple in a truck, who later had to BACK down the hill, cause were stuck in the way, and we made it to her sisters. Ironnically that is also the same night I met Harriat the kitten and took home that ridiculous ball of fur that is my crazy cat. We have been stuck togather like glue ever since. We always joke about how she “tried to kill me the first time we met”.
END OF SIDE STORY
Anyways, she has and I have been best friends ever since, I introduced her to the world of windstone, and she introduced me to the people who introduced me to windstone. I have live a heck of a three years out here, and she has lived the last two pretty right next me. She has helped me so much, I want nothing more than to give back. She has given me her time, her friendship, I have somehow been adopted into her family. So I’m really happy she’ll be able to get this. So this is a great stride so far, a small one, but a good one. I love to give whatever I can to world, and right now all I can give is art. That is all I have spare strength for, is to sit on my bum and paint. and draw..and then paint some more.
So there is my update, this took me an hour to type, and I need to sleep, so I Hope you enjoyed my mindless blabbering of continuing saga that plays out…Somethings were just meant to be..I only hope I’ll be able to return the favor some day.
My apologies for the many typos and such.
A side note: We have both saved each other a couple times now, but now she is one up on me..darn..
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comSorry to bump this again, but here is another bit. (copied from facebook, i am too tired to type it again)
So the therapy I am doing is called Muscular Strain and Counter-strain.
I feel like I got kicked in the arse by a horse today. Then later I got whacked in the face (accidentally of course) by an ice scraper, and whacked in the bum again by the car door. I have had a really long day, but I got my prescriptions and appointments all settled out finally.
Here is a link for those curious for more information. It isn’t an exact science, but it IS starting to correct the limp in both of my hips. The right is almost gone. The only issue is it all disconnecting again due to my chronic nerve issue. This is what I tried to explain in the last post.
http://www.jiscs.com/PDFs/CH13SCS.pdf
The human body has literally hundreds of points called “tender points”or “hot spots” where you muscle spindles are located. One injury may cause two or three of these to disposition and inflame, and normally your feedback loop would correct this. Sometimes, in a trauma related injury, the loop is disrupted. I have almost all of these spots, according to my therapist. To find them she has to poke me and some hurt so bad they make me squeal and tear up, and I end up gripping the table really hard. She worked on 8 today in my tailbone and lower back pelvis area, and four would not release, two on each side. That is why I feel like a horse kicked me. Sitting hurts.
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comThanks for updating us and I’m glad to hear about the gradual improvement. Good luck with your continued therapy, and I’m glad Mary’s been able to be such a help to you and that she can also be compensated now. That’s great. 🙂
Formerly had the Batman & Joker avatar!
I’m really glad that you’re starting to do a little better and I hope things continue to climb for the better. 🙂 Such a relief to hear that things are slowly coming under control!
Check out my finished artwork at http://falcolf.deviantart.com/ and my sketch/studio blog at http://rosannapbrost.tumblr.com/
Excellent!
Well last night was a little hectic, the new neighbors downstairs below me accidently discharged a firearm they hadn’t realized was loaded while unpacking. The police officers couldn’t find the bullet hole, so we think it hit the concrete where it meets the outside edge of my apartment.
I was jumpy for bit, but Mary drove me to town to check my other mailbox, which helped calm me down. No seizures. The kid downstairs that was putting away was only 19, poor kid, I don’t think I have ever seen him so jumpy and upset. I gave him some ice cream and we chit-chatted for a bit, and then he left to finish talking to the other neighbors, but I guess that’s aside the point.
Lol, I think he likes me and he knows about my seizures, so he was really worried, and was asking me to make sure my dishwasher and everything still worked.
EDIT**
Hey another edit, and I need some opinions:
So I don’t agree 100% with my neurologist on the CBT Therapy and ironically, neither does the therapist. She does however think she can help with some stress management to at least HOPEFULLY reduce them some more. She thinks I would/could do pretty well with some Neurofeedback and Biofeedback, but that is another waiting game on my insurance and getting another referral.
Meanwhile, as I am still looking for answers and wondering if more of this can be pulled together. My question: If the Non-Epileptic seizures are caused by traumatic stress, then why would they suddenly start when I was well, amazingly healthy at my age, and really had very little stress?
I cannot find a full sense in that. So meanwhile, I am continuing to research and look for other possible answers. My MRI was from 2012. I have had naught but an EEG since these began. I have an upcoming appointment as follow-up with my FNP.
I plan to request a spinal tap, to look for virus’s and rule out the possibility of any spinal meningitis or anything like that. I am also going to talk to her about possibly getting another MRI (or possibly a CT scan) of my brain and including my spine this time to look for any possible tumors or nerve issues that could be sparking some issues. I just feel lost, and I can’t stand how slow progress is. It shouldn’t take so long to get my strength back. I just want to keep ruling things out if I can. Is this weird or too much paranoia?
I have had so many seizures when I close my eyes all I see is the nightmares and night terrors over and over again. I won’t be beat by this. Anyone got any opinions on this?
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.com
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