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Just another pity party for myself I guess…but, a long waiting quiet thought has finally been asked:
Is my deteriorating health gonna have to force me to quit my first and only job?
I am so tired. Tired of being sick, tired of the seizures. tired of waiting for tests, waiting for answers, tired of sorrowful looks of friends, and the ununderstanding looks of people from afar, just wondering why I, a seemingly normal young adult of 20, who is usually bright and cheery and happy to see everyone, would be limping, with a constant expression of pain as I drag myself across the floor the store to lean on the counter, barely able to hold up my own weight as I reach to scan the first item on the belt.
I’ve have fallen so far in the past year and a half. I have gone from the fit me, that would swim everyday in the summer, ride my bike 9 miles through any treacherous weather including snow to get to work, being the top cashier, and freight worker with the most hours, getting kudos every week from the DM. I was gonna be the next assistant manager, I was gonna be out there enjoying myself, helping others every day. It’s just who I am, I wanna be out there, I wanna work, I want to live everyday of life. I wanna hike up mountains, go to places I have never been, making great friends and helping those around me every step of the way. I want a family of my own someday, to stand there with me, to wan’t to live, to know you can do anything you want no matter how hard!
…and here I am now. Having seizures at every turn. Near collapse as my co-worker drops me off at home, too weak to ride my bike, or even easily walk up my short flight of stairs to my apartment door. Unable to even stand for a four hour shift at work. Barely able to bear the searing pain I now live through every waking moment. Afraid to go to bed, that I’ll have another seizure, that I won’t be able to get up, or get help if i need it, and yes, even afraid that one day, I just won’t wake up. Always sick, and with no answers. Being told that I am having panic attacks, that I’m just faking it, that it is all in my head, that I am making this happen to myself. It’s like I have hit a wall.
I have no idea where to go, how to make it stop, or even what it is. But it is there. And now that great life, I had worked so hard for, those dreams I had that were easily in reach, only seem a distant memory of an idea. There are some day I awaken in so much pain, I just want to bury myself in house all day.both physical pain, and now also emotional. I can barely take care of my house, and me, let alone getting to work. What happened, and what do I do? I just feel so lost..and so tired. No, exhausted, and afraid. I have been facing the unwanted ideal that I would ever have to question whether or not I could still work. I’m too young to have to ask that, but with great sadness now I do…
Some day I wanted to meet Melody, I wanted to see the northern lights, I wanted to finally meet my biological mother in person. I wanted to be the best at work! The best I could be, and I wanted to help others do the same. I want to be that inspiration, but for as much as I fight it, it is wearing on me, and I feel I’m losing that fight now. I saw an older friend of mine waste away and die over the summer. At 72, Wade will always be an inspiration to me. It was always, “How can I help you, and How can I elp you help me” He had such a positive attitude, and ya know? I think I finally understand how he felt. How it feels to lose a hold on your life, to have everything you need, and to understand the things that matter most, that have true value, doing your best, always reaching out, being there for others, knowing that no matter how hard things have been you’ve always gotten through them. Well, I think I am starting to lose that will to fight. And I feel lost. I guess I am rambling now, but if you’ve read this far thanks for reading..
So that question then, I can barely make it through a shift, and I love my job, it was my ifrst job ,and my coworkers are like my other family..but what do i do? Can something like this really make you give up on all that? To just push those dreams aways?
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.comOh, hon, my heart just goes out to you right now.
I will tell you this, never give up on dreams. They keep us going, and can indeed come true!
For instance.. looking at the map of people we have here on the site.. You’re a reasonable drive from me (well, reasonable for me… I’ve been known to drive 8 hours to transport rescue rabbits) and I don’t live too far from the Factory. I could bring you to meet Melody 🙂 Granted, you know nothing about me, other than I like Windstones, so you might not be up for that, but hey… I only work weekends, so if you do want to, just let me know 🙂
*hugs*
I’m sorry to hear what you are going through. It must be really hard and upsetting and frustrating to deal with. So the doctors didn’t find any links to any health problems or they are still not sure what it is? Is there anyway you can maybe take a week or two vacation off of work and just try to relax, rest, meditate and try not to feel stressed? I had anxiety problems as a child, severe panic attacks where my mom would take me to the hospital with chest pains and not being able to breathe as I thought having a heart attack time and time again and they always told me there was nothing physically wrong with me. It was until years later I discovered that I was just having panic attacks and my problems were indeed in my head. Yours sound worse though like there is a physical cause although I am guessing anxiety or stress is making it worse or triggering the seizures.
I learned to overcome my panic attacks and have not had one in probably 15 years because I learned to recognize triggers and things that made me feel like that. I have worked many jobs myself, done stressful sales jobs and things my introverted personality is not naturally capable of handling but I did those things to make money and to push myself out of my comfort zone. I have realized though that with my social anxiety and natural shyness that sometimes I push myself too hard and so I have limited myself to only working short term jobs or temp jobs which I can make good money at for a few weeks or months and then stop and take a break for another few weeks or months. I try to listen to my body and mind and what I can handle. It seems to me like maybe taking a break would be good for you. Hopefully you wouldn’t have to quit your job if they understand what you have been going through and just give you time to recuperate and figure things out and rest your body.
When I don’t work, I draw, paint write, watch documentaries, search new things I want to learn online, sing, dance, go out with friends, go to church and sell things online to make money. I realize most people can’t afford to just not work for months at a time but I get by and I am much happier and less stressed that way when I am doing what I enjoy. Maybe if you focused more on things like that too for a while it would help. Sometimes I think we go through hard time and trials for a reason and we can’t see what the reason is at the time but whatever it is, in the end when we look back it will make more sense and it will humble you, make you grateful for what you do have and make you stronger to deal with bigger things in the future. I know you will overcome this with the right attitude and find out what is going on and still be able to accomplish everything you have dreamed of and have made your goals. Stay strong and try and stay positive although it is hard and just be faithful and have hope that things will get better. I don’t know how or when or why but I have seen so many people battle diseases, hardships, losses and more only to come out stronger in the end or at least learn to appreciate more of what they do have and put more focus on the good things in their lives.
Looking for rainbow or pink & teal grab bags!
Hey Sweetie – so sorry to hear you’re not doing well; that really sucks. Have you been checked for Lyme’s Disease? I had it when I was 19 and they knew nothing about it on the west coast. Luckily I had an internest who wouldn’t give. My blood work came back as a false negative. I’d had it so long that the markers in the bood never showed up. I was one of the first cases diagnosed in Cali and made the medical texts… Your symptoms sound a lot like mine did at at the advanced stage 4 level. It can’t hurt to look at that. Antibiotics help. Hasn’t got rid of it entirely, I still have flares from time to time but am most def MUCH better than I was. Hang in there and know we’re pullin’ for ya!
twindragonsmum
tdm
My heart goes out to you as well. I know how it feels to be down and tired and wonder if you’ll ever get back on your feet. I wrote a small poem to myself at a very dark time in my life: ‘And I said to the dream, I want you, but the dream was gone. So I stay up nights on end, wondering if there is a dream left.’ That was eight years ago and I have been through many other things, but I’m doing better.
I feel the same for you–things happen to us when we have to take detours–but the plan is still there–the dream is still there even though it doesn’t show clearly right now. There are dreams left, we just have to keep our dreams in our heart and not lose hope–no matter what.
The world needs people like you–full of life and love and so willing to give. I do hope things will take a turn for the better for you. I’ll keep you in my thoughts and send positive energy your way.
Hang in there–things will get better. 😉
Well, I have already taken a month off of work, and am now down to one or two days a weeks, which I can barely do. I can’t go anywhere cause aside of not owning a car it is now illegal for me to drive till I have 6 months free of confirmed seizures by the neurologists.
I have had every lab test done. My doctor even ran a full panel, looking for lyme, lupus, hepatitis, rheumatoid, and everything else I too tired to remember. All they have settled on is that I have some type of issue with my nerves hence the severe pain, and that I am having seizures though which kind, is unknown.
I know it isn’t panic attacks, as I have never had a history of them, until the hospital visit in August, when the EMT’s arrived towards the end of it, found nothing wrong, and so settled on that answer. This last time I was in the hospital, a week and a half ago, They said that I have a “history of panic attacks” that they tacked on my list the last time, and said that that is what caused the seizure, that I made myself have it, and again was only there for the last 45 minutes of it.
In reality I had been at aquatic therapy for the nerve pain, keep in mind I had had another seizure the night before, and something wasn’t “right”, so I stopped, got of the pool, and then I passed out, and was unconscious for about 5-10 min, during which the seizure started. I kind of came to, and was in and out, but the next thing I remember after sitting in that chair, was being in an ambulance, with my body shaking, still unable to move, or control my muscles and shaking limbs.
I have had an EKG, and an MRI, both were normal. So I am waiting the dreaded EEG on the 11th of December. I have been instructed that I will have to stay awake for 24 hours before the test, of which I already know that the prolonged time of no sleep will cause the muscle spasm i get when tired, of which I recently found out are not normal, but actually myoclonic seizures. Go figure, I may have actually had this my whole life..These weird little things I always thought were normal are starting to tie in..
so ya, thanks for the support though…I just don’t know who to talk to, it not something people can understand, and meanwhile, my friend are there and have to watch me fall further and further away, and waste away, because there is nothing anybody can do about it at this point..oh and to top it off I have a cold now, just the cherry on top, i guess..
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’m no medical doctor, but I will say this: tests are not the Source of All Knowledge. Seriously. A negative test is not necessarily a negative answer. In the first place, if one doesn’t ask the right question, one doesn’t get the answer one needs. So while I’m glad they’ve tested for everything they can think of, it’s the more “out there” stuff that I wonder about. Have you ever lived in the desert, or visited the desert? How about the Central Valley of California? If the answer to either is yes, have they tested for Valley Fever (coccidioidomycosis)? Although it’s famously a disease of the lungs, I know for a fact that it can get into the spinal cord. Freaking weird place for it to go, and nobody can say why it did that . . . but that’s the POINT. Yes, when you hear hoofbeats, look first for horses not zebras. But when it ain’t a horse, gosh darn it, I want them looking for the ruddy zebra.
TDM is correct: many tests for things like Lyme depend on the presence of telltales in the blood that may come and go. I’ve seen that happen. It’s absolute folly for a doctor to assume that because the test was run once, and was negative, that it will always be negative. Disease fights a constant battle with the immune system. Sometimes the disease is winning, and sometimes it’s losing, but the point is, it’s a system in flux. I’m not saying go have all those tests done again! But rather, figuring this out is going to take some heavy sleuthing. History is essential. Where have you travelled, when did the signs start, what brings them on, all that kind of thing. These provide clues as to which tests might be worth a re-run.
The miseries that you are going through right now are in part due to your body’s determined fight to defend itself. Please, even though this is one of the low points–and who wouldn’t feel really down right now?–be determined that you will get better. Will power is a very valuable tool. Your dreams are not gone, and they are not forever out of reach, so long as you continue to fight for them. It’s OK to fight in smaller ways for a while . . . even if it is only to say to yourself, “I will do this someday!” Make yourself that promise. Having something to strive towards gives one strength. If the job has to go for now, then so be it. It’s OK to let it go while you focus on the fight. But promise yourself that you will return.
Speaking of zebras, I’m going to throw one more thought at you. The nerve symptoms that you are having sound like they’re affecting both the nerves of your body and the ones in your brain. This is actually rather unusual, because the brain has considerable protections against nasty stuff getting in there. So maybe we are dealing with a chronic inflammatory issue–because seems to me like it would take time for the blood-brain barrier to be affected. Auto-immune disease occurs when the body gets confused over what is “self” and what isn’t, and starts injuring itself. It can be brought on by diseases that the body isn’t sure how to fight–like tick diseases, and fungal diseases, and sometimes the completely unexpected.
I once knew a dog who was nearly paralyzed in the front half of her body. She had tremendous swelling of her eyelids, her jaw was locked nearly shut, and she couldn’t control her front limbs. All of her joints were swollen and painful. She had also seizured. After huge numbers of tests, the problem was found. It was a stump pyometra: an abscess in the uterus remnant. From that abscess, toxins and nastiness were absorbing into the bloodstream. Her body reacted violently to these things, in an auto-immune response targeting multiple tissues, and caused her bizarre variety of symptoms. Once the abscess was removed, she recovered 100%.
So what I’m saying is, nobody had a freaking clue what was wrong with that dog until they went back and started going through all of her chart step by step. They forced themselves to set aside what they thought was wrong with her–let go of all their preconceived notions–and looked again. And part of that process was taking another look at the X-rays, whereupon the radiologist said, “Why does this dog have two bladders?” Well, because one of them is an abscess. Nobody had ever heard of an abscess causing so much trouble, but it did. That’s an example of a zebra–more like a zebra in neon stripes riding a bicycle and singing “I’m Too Sexy For My Shirt”–but still, because her doctors went back and looked at her case from the very beginning, and retraced their steps, they figured it out at last.
Your courage rings clearly in your words. Hang in there. Keep your dreams close. We’re all pulling for you!
What barrdwing said. Negative results are not necessarily the answer. Something’s happening and it’s recent. You’re young, so it points away from certain diseases, but they shouldn’t be ruled out. I don’t remember if you’ve said you’ve had a spinal tap and some tests done on your cerebrospinal fluid, but if you haven’t, you should.
What barrdwing said. Negative results are not necessarily the answer. Something’s happening and it’s recent. You’re young, so it points away from certain diseases, but they shouldn’t be ruled out. I don’t remember if you’ve said you’ve had a spinal tap and some tests done on your cerebrospinal fluid, but if you haven’t, you should.
Listen to barrdwing and ghostdragon. Check and check again. Tests aren’t the be all and end all of diagnostics. In addition to the conditions already mentioned, has anyone considered exposure to toxic chemicals? Or, reactions to medications? Or, your thyroid?
In the meantime, hang in there.Life is beautiful.
I’m no medical doctor, but I will say this: tests are not the Source of All Knowledge. Seriously. A negative test is not necessarily a negative answer. In the first place, if one doesn’t ask the right question, one doesn’t get the answer one needs. So while I’m glad they’ve tested for everything they can think of, it’s the more “out there” stuff that I wonder about. Have you ever lived in the desert, or visited the desert? How about the Central Valley of California? If the answer to either is yes, have they tested for Valley Fever (coccidioidomycosis)? Although it’s famously a disease of the lungs, I know for a fact that it can get into the spinal cord. Freaking weird place for it to go, and nobody can say why it did that . . . but that’s the POINT. Yes, when you hear hoofbeats, look first for horses not zebras. But when it ain’t a horse, gosh darn it, I want them looking for the ruddy zebra.
TDM is correct: many tests for things like Lyme depend on the presence of telltales in the blood that may come and go. I’ve seen that happen. It’s absolute folly for a doctor to assume that because the test was run once, and was negative, that it will always be negative. Disease fights a constant battle with the immune system. Sometimes the disease is winning, and sometimes it’s losing, but the point is, it’s a system in flux. I’m not saying go have all those tests done again! But rather, figuring this out is going to take some heavy sleuthing. History is essential. Where have you travelled, when did the signs start, what brings them on, all that kind of thing. These provide clues as to which tests might be worth a re-run.
The miseries that you are going through right now are in part due to your body’s determined fight to defend itself. Please, even though this is one of the low points–and who wouldn’t feel really down right now?–be determined that you will get better. Will power is a very valuable tool. Your dreams are not gone, and they are not forever out of reach, so long as you continue to fight for them. It’s OK to fight in smaller ways for a while . . . even if it is only to say to yourself, “I will do this someday!” Make yourself that promise. Having something to strive towards gives one strength. If the job has to go for now, then so be it. It’s OK to let it go while you focus on the fight. But promise yourself that you will return.
Speaking of zebras, I’m going to throw one more thought at you. The nerve symptoms that you are having sound like they’re affecting both the nerves of your body and the ones in your brain. This is actually rather unusual, because the brain has considerable protections against nasty stuff getting in there. So maybe we are dealing with a chronic inflammatory issue–because seems to me like it would take time for the blood-brain barrier to be affected. Auto-immune disease occurs when the body gets confused over what is “self” and what isn’t, and starts injuring itself. It can be brought on by diseases that the body isn’t sure how to fight–like tick diseases, and fungal diseases, and sometimes the completely unexpected.
I once knew a dog who was nearly paralyzed in the front half of her body. She had tremendous swelling of her eyelids, her jaw was locked nearly shut, and she couldn’t control her front limbs. All of her joints were swollen and painful. She had also seizured. After huge numbers of tests, the problem was found. It was a stump pyometra: an abscess in the uterus remnant. From that abscess, toxins and nastiness were absorbing into the bloodstream. Her body reacted violently to these things, in an auto-immune response targeting multiple tissues, and caused her bizarre variety of symptoms. Once the abscess was removed, she recovered 100%.
So what I’m saying is, nobody had a freaking clue what was wrong with that dog until they went back and started going through all of her chart step by step. They forced themselves to set aside what they thought was wrong with her–let go of all their preconceived notions–and looked again. And part of that process was taking another look at the X-rays, whereupon the radiologist said, “Why does this dog have two bladders?” Well, because one of them is an abscess. Nobody had ever heard of an abscess causing so much trouble, but it did. That’s an example of a zebra–more like a zebra in neon stripes riding a bicycle and singing “I’m Too Sexy For My Shirt”–but still, because her doctors went back and looked at her case from the very beginning, and retraced their steps, they figured it out at last.
Your courage rings clearly in your words. Hang in there. Keep your dreams close. We’re all pulling for you!
For what this may help, or not, Most of these symptoms started slowly over time after I had a very severe concussion in the winter of 2011. I was biking to the library and hit a slick of ice, and sliding side ways I stuck the curb, just under the edge of my helmet, as I was pulling into the drive. I was out for maybe 10-15 seconds. I never saw medical treatment, as I was in a sticky situation, and was instead given anti-inflammatory and swent to bed. The next three days I ensued the most painful experience I have ever had.
For what It matter’s. this EEG will be important, and even though I have never shown many signs of epilepsy, I have learned many thing in recent times they may actually tie things that I thought normal as a child to be small connections. Although for further info, The nerve pain and small mental blackouts, even maybe memory lapses, is what specifically started after after that. The pain got worse after I was hit by a car on my bike last year in September, injuring my pelvis as I slid over my bike and on to their car. (I was cut off, going down a bicyle path) In the past few months the nerve pain has gotten real bad, has (for what it seems) caused at least two of the seizures. I started aquatic therapy, which has helped, but after the last seizure, it was stopped until the neurologist gives the OK to continue.
I have never traveld far. I grew up in Michigan in a small town, and I have never been a sickly person. I have always healed really well, and fast from injury’s and cold for me are usally gone in half the time of most I know, so I have little understanding there. It’s just a waiting game it seems. When will it happen again, where will I be, What will the outcome be? These are questions that have become my life, and I am truly afraid of these seizures. And the weakness and tirednss, aches, they just don’t add up to the nearve pain. Where does the siezure come from. These aren’t in my head. Poeple have physically seen me have the siezures, they see the pain I am in, it makes me shudder and tear when it gets bad, and I have a high pain tolerance I always have, so this is saying somthing. I almost always have a constant limp now from the pain and weakness in my joints. It’s affecting my hands, and even making my art difficult..Just looking for answeres and waiting..but for what?
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.comOh, 96037, I am also very young, so I have no experience to be giving suggestions like everyone else here but I feel for you, from your words I too can feel your strength and I’m certain that you can overcome this. I can’t say much else except that my heart also goes out to you and that I send you hugs!! You can do this!
Check out my finished artwork at http://falcolf.deviantart.com/ and my sketch/studio blog at http://rosannapbrost.tumblr.com/
Excellent!
Have them check for a Chiari Malformation. Your head trauma might have made something that is often not even diagnosed become a problem.
What is that? Would it have shown on an MRI?
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.comWhat is that? Would it have shown on an MRI?
Essentially, the bones at the base of your skull are malformed, or broken. That allows the brain stem to sit lower than it should. It can disrupt spinal fluid flow, cause headaches, neck pain, clumsiness, and other general symptoms. However, in some cases, people with Chiari malformations can suddenly get symptoms after head trauma. Some experience nerve pain in the arms and legs, some experience seizures. http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
They SHOULD catch it on an MRI, but often they don’t. My mom had CT scans done several times over the years, but they didn’t catch her Chiari Malformation until she was in her 50’s. It explains a lot of things for her, including migraines, TMJ, and clumsiness (possibly even depression). Now, I’m not saying that this is your problem, but it’s one that’s easy enough to diagnose and is often missed. Don’t get your hopes up too high–it’s just a suggestion.
Some stuff of interest:
Seizures
http://www.medhelp.org/posts/Chiari-Malformation/Seizure-like-activity/show/1525093Head trauma
http://www.conquerchiari.org/subs%20only/Volume%206/Issue%206(6)/Minor%20Trauma%20Sparks%20Symptoms%20%206(6).htmlNerve pain
http://www.medhelp.org/posts/Chiari-Malformation/Nerve-pain/show/1769291Of course, all of these things are also symptoms of meningitis or other spine-related problems.
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