trying to grasp life as it is, accept things,learn how to navigate the body I was given to work with, the mind i was given to use. Learning about me, the syndroms, disorders, whatever you want to call them, learning of them and so learning of me. What makes me tick, or fall down, what makes me walk, run, sleep, eat, fall down!
no really i have found the last few months more focus on me, learning all the new things I have learned I have. Getting answers to many things, understanding why things have happened my whole life, and trying to accept it all. Its not been easy, I cant even say I have accepted it all, but I am trying. I am trying to find positives, ways to cope with out loosing myself more, loosing more things I love to do. Like for instance I LOVE to take kids to the park. We have not done much the past few summers in parks due to my not feeling up to it, so now I have thrown a blanket and pillow in van, they stay 24/7 when we go anywhere, when I feel a nap coming on we find a park, no matter where you are theres a park near by! So we go to the park, older kids play with younger kids, I nap near by. If needed i am around, I get to rest, watch them enjoy life and so I am enjoying life as well! No clue how we will work it come winter! but when its warm this is the plan from now on! We have also started joking about cataplexy, and narcolepsy and all the weird things I do due to it. Makes it lighter. I have read and found good people with the same things, and shared some funny stories with kids, letting them see the funny side and also other peoples explanations of how it feels, that sound like me, lets them learn more and it helps. I am not only tree huggin hippy momma I am also narco momma now! I am trying to find ways to handle it in public, it happens more and more, happens that way. Ialso discover- and all my family reading this will enjoy this all growing up how many times was I on crutches, fall down get hurt, trip on nothing, drop things, always a clutz right! well guess what I am NOT a CLUTZ! I have cataplexy! LOL thought it was funny when I realized that I am not a clutz its cat attacks! I think Jolie I still have to take blame for sparklers and scars, cant blame that one on Cat attack! Sorry bout that still!
and you know how sleepy I was as a teen? always falling asleep when I shouldnt? Yup That was N there, everyone thought I was depressed or lazy didnt want to go to school, nope it was narcolepsy. It amazes me while I learn. So now with my new knowledge I am trying to save what i can, learn to roll with the flow, I have always done that well but this has messed with my head. So now I get to start moving forward, and learn how to make it work for me. I know it can be done. I have a few things happening,I will tell you more later, not just yet. I am still open for business, its been slow and on back burner, soon will catch up. I am going to focus more on Nutritional Healing. So many things can get better by eating right. And right is different for everyone! Weight, moods, pain, diabetes, heart, all kinds of things. There isnt an ailment that cant be helped in some way with nutrition, foods, herbs, they do so much. The do a body good!
I have done so much learning recently its unreal.
I have learned lot lately, harsh words said in frenzy, retaliation, sleep, fear, anger, doubt, confusion only hurt. Always think before you speak, especially if its someone you love in your life, you never know when your words cant be fixed no matter what you say. When what you say is the thing that makes it so a person will never talk to you again without always thinking theres a motive, even if it starts out an accident, always calm down, think clear, get your facts, say it clear, make sure its clear, because you can loose those closest to you, I had that experience recently, it is something I will forever be sad for and miss, wish I could fix, know I cant, if i could i would in a heart beat. So think first, dont answer the phone when sleeping, and if its heated cool off and pick up later before damage is done. then maybe you wont be sorry
I know I am sorry, more than anyone knows or will know unfortunately wish I could send hugs in the mail! LIKE HARRY POTTER THE REAMING THOSE BOYS GET BY LETTER ONLY A HUG BY LETTER WOULDNT IT BE AWESOME! I would send lots!
till later
Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts
Thursday, September 2, 2010
Friday, July 16, 2010
I have had a denial from disability. I am disabled but not enough they say. Trying to decide if I appeal or go to work again some how. I am unsure how I would manage working and everything else. I am unsure what I will do. I managed a computer on payments that are lower than I have ever seen. Its a decent one and will work. I am going to talk to attorney about disability, and some other options. I will keep at my schooling and small business. I have many opportunities with that, I just need my health to co operate to do it. The med I am on now for Narcolepsy helps my fibro pain a lot also. It has been a huge help. I feel my brain working better again, my memory improving, some other issues I have been having improving slowly. Its a struggle to take this medicine. It does have draw backs I do not like. I struggled with the decision to try the med to start with, I struggle daily with it. I prefer to go natural, I hate the drugs. This one is yucky but it has helped so many things. I have been able to pin point when my Narcolepsy started, I was 12 years old. My mom has been able to also. It has progressed over the years. It effects many things, There is more to narcolepsy with cataplexy than people know. The sleeping is a small part. There are severe memory issues that are crippling, thought processing issues, the way things are thought out, understood or misunderstood, retained, finding words when talking to people. Like in a simple conversation I will not be able to remember simple words to talk, I have had conversations that went like this " I saw the um um uhh umm that thing in the sky with colors, can remember what it is" and in fact it was a sunset I saw, but remembering that was not happening. It seems simple like no big deal but it makes you feel like an idiot. I get things jumbled and dont retain them like I should. Studying for school has been a challenge, I read and re read, re read, and struggle through it, and sometimes I will read and retain it all, then later cant. So I have to rely on my books to verify everything for me. Its frustrating. There are many things. The kids can ask to do something, I will later not remember my answer, or that they asked. We have had lots of issues from this. I keep notes on everything, it all gets written. Even then if I forget to take notes, forget where my "Brain" is(notebook, forget to check it, well then I am lost.
Going places had gotten harder before new med, I was getting lost in areas I know well. Scary stuff. Forgetting where I am going or why.
Then there is the Cataplexy. Cataplext comes with Narcolepsy, its a weakening of muscles. Sometimes big very obvious- leg gives out, fall down, arm not working, head flop over, so many things, or so small like 1/2 lip not smiling when other 1/2 does. This is triggered by lots of things, emotions being biggest trigger. I have always been a clutz, tripping, dropping, fall upstairs and down, spend time on crutches, get off them and end up on them again due to tripping on nothing. The last few years I started falling, be walking and suddenly my right leg would not hold me up, down I would go, then the left leg started again, then my legs would just not respond and do what I wanted. It spread, it became more often. Right before my dx I was arguing with A and walked across the room, very upset. Next thing I knew everyone was around me, my head throbbing, laying on the ground, cataplexy full blown took me out! So now when I am upset, stressed, frustrated, angry, sad, or even real happy, I try to stay sitting, regroup and not fall. There are days I am afraid to go anywhere, If I have a C attack and am in public people want to call 911, its not needed. C only lasts a few seconds to 30 min. Usually never totally unconscious.
Then there is Sleep paralysis, nothing like waking up unable to move any part of your body, not feeling like your breathing, knowing you must be, your not dead, but no voice, no moving, feels like your pinned. Scary it is. And the hypnogogic hallucinations, when dream land meets sleep land, your part way asleep and awake, start to dream and they become real in the small part of your brain thats awake, never a good dream when that happens. I went through years of reliving past issues that could have been lessened had my N been dx sooner.
So all of this with the new med is lessened, improving much! I was with out new med for a few days, fumbling all over, clutz, dropping things, stumbling when it dawned on me and my mom at same time, it was C and I regrouped, calmed down and was ok. Thats when I realized how much narcolepsy with cataplexy has controlled and effected my life all these years. It was quit the realization, I didnt know if I wanted to scream in happiness, anger, frustration or sadness.
I saw my doc for it, he asked me how many other meds I tried before this, what all had I tried. we talk, I realize that my younger dumb years so much of what I did was self medicating. I guess its common.
So I go on using a medication with some icky possible side effects, worrying about it. But I have a brain again, slowly awakening from a long narco induced slumber, becoming aware of myself, my arms and legs that are not so clumzy, fingers that can hold small things with out dropping them, feet that can walk and not trip over air. I take it day by day and hope the possible bad effects dont get worse than they have. I worry about the possibility of not having finances for the med- $1921.00 a month for the dose I am on now. I worry about not being able to swing that.
But I am not falling as much, not falling asleep all the time, not waking up unable to move, or dream land meeting sleep land.
I now go to bed or try earlier, I take my med at night I dont take calls after I take it, I cant drive after taking it, I must have someone able to handle anything that comes up if I cant. When I cant sleep after taking it I have to be very careful of what I do or say, it may not come out right. I had someone tell me she would never take a medicine like this. I hope she never has to or is faced with N and the possibility. Its not perfect but I may get a life back thats been taken by narcolepsy with cataplexy, fibromyalgia, sciatica and myofacial pain syndrome. Still trying to get control of some things. I use natural methods when I can, preferring that, and when I have to using allopathic medicine. I have an awesome team of docs, and trying to find a balance of everything. Applying Natural medicine, allopathic medicine, nutritional healing all to try to get back some of my life that I so often feel robbed of by medical issues.
Trying to get things done I am unable to do now. Trying to accept my limitations without feeling like I am giving in or giving up. Not easy to do, I am so used to being independent, or trying to be. trying to do more myself, being energetic, and able. This has been hard.
Its been a few since I started this. Life is busy.
I am on a new med for a month now. With it I am improving some. I had a bad reaction to it and had to back down in dose. Its still helping some though.
Narcolepsy with C makes you feel like your lifes been stolen. The key is finding a way to take it back. Even if it means all your dreams change into new dreams, new plans. Modified plans whatever. I think this is where faith comes in. I have always believed in Enduring WELL to the end, not just enduring. There is a difference in enduring and enduring well. Its not always easy. Sometimes I feel I am hanging on by a thread, some days I feel like the thread snapped. Somedays I feel like giving up but not keep going.
With my denial comes deciding to appeal again or try to return to work. I am not up to working enough to support us yet. So I will appeal probably. Applying for Disability was hard and it messed with my head in many ways. To me I was giving up, giving in the disease. I struggle with it daily. Its caused depression. Trying to accept being chronically ill without feeling like I gave up is hard. Hopefully someday I can come to terms with it. Ideally I would like to feel well enough to work to care for my family. But until then hopefully I can find a way to pay bills, make ends meet, accept what is with out feeling to down.
I have had opportunities for business stuff. Unfortunately I have not been up to accepting some. I am trying to follow through on a few.
Going places had gotten harder before new med, I was getting lost in areas I know well. Scary stuff. Forgetting where I am going or why.
Then there is the Cataplexy. Cataplext comes with Narcolepsy, its a weakening of muscles. Sometimes big very obvious- leg gives out, fall down, arm not working, head flop over, so many things, or so small like 1/2 lip not smiling when other 1/2 does. This is triggered by lots of things, emotions being biggest trigger. I have always been a clutz, tripping, dropping, fall upstairs and down, spend time on crutches, get off them and end up on them again due to tripping on nothing. The last few years I started falling, be walking and suddenly my right leg would not hold me up, down I would go, then the left leg started again, then my legs would just not respond and do what I wanted. It spread, it became more often. Right before my dx I was arguing with A and walked across the room, very upset. Next thing I knew everyone was around me, my head throbbing, laying on the ground, cataplexy full blown took me out! So now when I am upset, stressed, frustrated, angry, sad, or even real happy, I try to stay sitting, regroup and not fall. There are days I am afraid to go anywhere, If I have a C attack and am in public people want to call 911, its not needed. C only lasts a few seconds to 30 min. Usually never totally unconscious.
Then there is Sleep paralysis, nothing like waking up unable to move any part of your body, not feeling like your breathing, knowing you must be, your not dead, but no voice, no moving, feels like your pinned. Scary it is. And the hypnogogic hallucinations, when dream land meets sleep land, your part way asleep and awake, start to dream and they become real in the small part of your brain thats awake, never a good dream when that happens. I went through years of reliving past issues that could have been lessened had my N been dx sooner.
So all of this with the new med is lessened, improving much! I was with out new med for a few days, fumbling all over, clutz, dropping things, stumbling when it dawned on me and my mom at same time, it was C and I regrouped, calmed down and was ok. Thats when I realized how much narcolepsy with cataplexy has controlled and effected my life all these years. It was quit the realization, I didnt know if I wanted to scream in happiness, anger, frustration or sadness.
I saw my doc for it, he asked me how many other meds I tried before this, what all had I tried. we talk, I realize that my younger dumb years so much of what I did was self medicating. I guess its common.
So I go on using a medication with some icky possible side effects, worrying about it. But I have a brain again, slowly awakening from a long narco induced slumber, becoming aware of myself, my arms and legs that are not so clumzy, fingers that can hold small things with out dropping them, feet that can walk and not trip over air. I take it day by day and hope the possible bad effects dont get worse than they have. I worry about the possibility of not having finances for the med- $1921.00 a month for the dose I am on now. I worry about not being able to swing that.
But I am not falling as much, not falling asleep all the time, not waking up unable to move, or dream land meeting sleep land.
I now go to bed or try earlier, I take my med at night I dont take calls after I take it, I cant drive after taking it, I must have someone able to handle anything that comes up if I cant. When I cant sleep after taking it I have to be very careful of what I do or say, it may not come out right. I had someone tell me she would never take a medicine like this. I hope she never has to or is faced with N and the possibility. Its not perfect but I may get a life back thats been taken by narcolepsy with cataplexy, fibromyalgia, sciatica and myofacial pain syndrome. Still trying to get control of some things. I use natural methods when I can, preferring that, and when I have to using allopathic medicine. I have an awesome team of docs, and trying to find a balance of everything. Applying Natural medicine, allopathic medicine, nutritional healing all to try to get back some of my life that I so often feel robbed of by medical issues.
Trying to get things done I am unable to do now. Trying to accept my limitations without feeling like I am giving in or giving up. Not easy to do, I am so used to being independent, or trying to be. trying to do more myself, being energetic, and able. This has been hard.
Its been a few since I started this. Life is busy.
I am on a new med for a month now. With it I am improving some. I had a bad reaction to it and had to back down in dose. Its still helping some though.
Narcolepsy with C makes you feel like your lifes been stolen. The key is finding a way to take it back. Even if it means all your dreams change into new dreams, new plans. Modified plans whatever. I think this is where faith comes in. I have always believed in Enduring WELL to the end, not just enduring. There is a difference in enduring and enduring well. Its not always easy. Sometimes I feel I am hanging on by a thread, some days I feel like the thread snapped. Somedays I feel like giving up but not keep going.
With my denial comes deciding to appeal again or try to return to work. I am not up to working enough to support us yet. So I will appeal probably. Applying for Disability was hard and it messed with my head in many ways. To me I was giving up, giving in the disease. I struggle with it daily. Its caused depression. Trying to accept being chronically ill without feeling like I gave up is hard. Hopefully someday I can come to terms with it. Ideally I would like to feel well enough to work to care for my family. But until then hopefully I can find a way to pay bills, make ends meet, accept what is with out feeling to down.
I have had opportunities for business stuff. Unfortunately I have not been up to accepting some. I am trying to follow through on a few.
Tuesday, May 12, 2009
Today is my chubby's Birthday!!
Yes he is 6 years old today!! I cant believe it! I work this morning then its Birthday time! We were going to attempt an outside at the park thing, but its looking kinda icky outside! So I am thinking inside will have to do. I will take LOTS of pictures and put them on later! You know what he said this morning? It was so cute. I woke up, then he did. I said "its my baby boys birthday" gave him a big momma hug, he says "Im not a baby now mom I am a big boy" Well how do I argue that? I am encouraging big boy stuff, but he is MY baby! So I decide I will let him think he is a big boy, but secretly he can still be my baby boy! So he is not allowed to read this blog entry- ever!
Today is also Fibromyalgia Awareness day! Check out this site to learn a little more about it http://www.fmaware.org/site/News2?page=NewsArticle&id=8833
I have been doing a lot of reading, trying to find some new ways to help relieve pain. I have some new ideas to try. But thought that it being Fibro Awareness day I would share a link, there is so much more info out there, if your interested ask me, or do a web search. Just be careful not everything you read is true!
I walked around the house the other night and took pictures of some of the flowers growing! I have a beautiful yellow rose bush! I did not know about it! Lots of other pretty flowers, yellows, purples I love it! I dont know what all the flowers are. I wish I did. There are some small yellow that are beautiful, some white, some purple, I have no clue. I am not good at identifying plants, this is where Ineed Sister Chandler!! She can identify anything! She is awesome when it comes to that no one can top her! So PPresident Chandler, show her my pics and ask her if she knows please??? Before I go insaner!Is that a word?
To bad my NEW mower wont start to mow my over grown lawn that looks horrid because its so long!Going to take it back as soon as I get a chance, My yard looks terrible because of not being mowed, think I am going to end up paying someone to do it for me!
Heres the pictures:
Today is also Fibromyalgia Awareness day! Check out this site to learn a little more about it http://www.fmaware.org/site/News2?page=NewsArticle&id=8833
I have been doing a lot of reading, trying to find some new ways to help relieve pain. I have some new ideas to try. But thought that it being Fibro Awareness day I would share a link, there is so much more info out there, if your interested ask me, or do a web search. Just be careful not everything you read is true!
I walked around the house the other night and took pictures of some of the flowers growing! I have a beautiful yellow rose bush! I did not know about it! Lots of other pretty flowers, yellows, purples I love it! I dont know what all the flowers are. I wish I did. There are some small yellow that are beautiful, some white, some purple, I have no clue. I am not good at identifying plants, this is where Ineed Sister Chandler!! She can identify anything! She is awesome when it comes to that no one can top her! So PPresident Chandler, show her my pics and ask her if she knows please??? Before I go insaner!Is that a word?
To bad my NEW mower wont start to mow my over grown lawn that looks horrid because its so long!Going to take it back as soon as I get a chance, My yard looks terrible because of not being mowed, think I am going to end up paying someone to do it for me!
Heres the pictures:
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