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Trouble Working And Managing Daily Activities, Feeling Hopeless :(


Miss Emily

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Miss Emily Apprentice

I was diagnosed with Celiac almost two years ago now. It is thought that heart surgery at age six to repair a heart murmur triggered my Celiac. So, ever since I can remember I have been sick. Daily nausea, fatique, endometriosis, depression, bone pain, muscle weakness, severe diarreaha, cramps, frequent hospital and doctors visits, absences etc and too numerous diagnosis to list. I had always napped in the afternoon to be able to handle evening activities and was never able to work while in school. In highschool I suffered from a misdiagnosed spinal fracture, ankle fractures, and arm fractures due to undiagnosed osteoporosis. Finally I received a Spinal Fusion to correct my petical fracture but continued to have back pain after physical therapy was discontinued. I barely made it through four years of college before I was forced to quit after failing several courses based only upon absences. I was married and subsequently divorced because of my chronic illnesses. I finally was diagnosed with Celiac but struggled for over a year before I felt any relief. I tell you all this because now, at 23 I am lost. The good news being I have found new hope with a diagnosis of Celiac, reversed my osteoporosis, and have dramatically reduced the diareaha ailments. However, I have no money to go back to school, student loan debt equivalent to a Bachelor's degree with only 50 credits, medical bills piling up and little income. I work part time as a nanny, but find I am extremely limited in the amount of time and labor I can put forth before my body rebels. I feel so stuck because I cannot move forward. I am always hungry because it is difficult to afford foods that don't make me ill (at this point no gluten, dairy, soy, additives, etc. the list is very short) and I have a difficult time getting my family to buy these items. (Although my home is gluten-free, thanks to my family :) ) I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do. And I guilt myself all the time saying "this could be worse, you could have cancer!." But, that certainly does not help. So, I am in therapy, working closely with my doctor and reading all I can about my options. However, I really need to hear that someone gets where I am coming from. That it is tough to want to do so much but only be able to do a little. So, kind words anyone?

PS. Sorry this is a bit of a rant but I need support!


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Rachelmoon Rookie

I feel for you! It is such a relief to know that we can feel better, but it feels like its at such a cost. I get angry at my husband for eating a peanut butter and jelly sandwich not because I want one but because its not fair that I cant have it! I feel so childish! And I also understand how you feel being so weak! It takes me so long to make dinner because I have to rest in between. I ache after chopping vegtables or even just stirring something! So know you are not alone!! I hope things start looking up for you soon! I like to believe that everything happens for a reason and the road you were forced to take will lead you to where you need to be!

nasalady Contributor
I tell you all this because now, at 23 I am lost. The good news being I have found new hope with a diagnosis of Celiac, reversed my osteoporosis, and have dramatically reduced the diareaha ailments.

I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do.

Emily, I'm so sorry about what you're going through. And you've come to the right place for support! Many of the people here were extremely ill when they were diagnosed with celiac disease. Believe me, there are a lot of us who understand the frustration of not being able to physically handle the day-to-day necessities of life.

But please don't believe that your life is over at the tender age of 23!

I've only recently been diagnosed with celiac disease, a few months ago at the age of 52. I'm just beginning what I hope is a journey of healing, but I have several different autoimmune diseases in addition to celiac, plus fibromyalgia. I'm in a wheelchair because of the pain of fibro and rheumatoid arthritis....it hurts too much to walk more than a few yards. But some of my symptoms have improved substantially, particularly the neurological ones (hand tremors, vertigo, peripheral neuropathy, headaches, etc.). So this gives me hope that I will continue to get better. I have to get better! As do you!

Is there any way you can apply for disability so that you can have some time to rest and continue the healing process?

mushroom Proficient
I was diagnosed with Celiac almost two years ago now. It is thought that heart surgery at age six to repair a heart murmur triggered my Celiac. So, ever since I can remember I have been sick. Daily nausea, fatique, endometriosis, depression, bone pain, muscle weakness, severe diarreaha, cramps, frequent hospital and doctors visits, absences etc and too numerous diagnosis to list. I had always napped in the afternoon to be able to handle evening activities and was never able to work while in school. In highschool I suffered from a misdiagnosed spinal fracture, ankle fractures, and arm fractures due to undiagnosed osteoporosis. Finally I received a Spinal Fusion to correct my petical fracture but continued to have back pain after physical therapy was discontinued. I barely made it through four years of college before I was forced to quit after failing several courses based only upon absences. I was married and subsequently divorced because of my chronic illnesses. I finally was diagnosed with Celiac but struggled for over a year before I felt any relief. I tell you all this because now, at 23 I am lost. The good news being I have found new hope with a diagnosis of Celiac, reversed my osteoporosis, and have dramatically reduced the diareaha ailments. However, I have no money to go back to school, student loan debt equivalent to a Bachelor's degree with only 50 credits, medical bills piling up and little income. I work part time as a nanny, but find I am extremely limited in the amount of time and labor I can put forth before my body rebels. I feel so stuck because I cannot move forward. I am always hungry because it is difficult to afford foods that don't make me ill (at this point no gluten, dairy, soy, additives, etc. the list is very short) and I have a difficult time getting my family to buy these items. (Although my home is gluten-free, thanks to my family :) ) I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do. And I guilt myself all the time saying "this could be worse, you could have cancer!." But, that certainly does not help. So, I am in therapy, working closely with my doctor and reading all I can about my options. However, I really need to hear that someone gets where I am coming from. That it is tough to want to do so much but only be able to do a little. So, kind words anyone?

PS. Sorry this is a bit of a rant but I need support!

Dear, dear Emily, of course you need support!. What a tough row to hoe! So many fractures with undiagnosed osteoporosis (what was wrong with those docs???) A failed marriage due to celiac, saddled with student loan debt for classes you were too ill to attend, medical bills you can't afford because you can't get a job that will pay for them because you couldn't complete college, hungry trying to afford foods that contain no gluten, dairy or soy. That is a heavy burden to bear. No way do you guilt yourself over that. :rolleyes: Believe me, you have friends here who can try to comprehend what you are going through, but what you are going through is way more than most of us have had to deal with; many of us here find it hard enough to give up eating gluten. You, my dear, have been overburdened. I am so glad you are in therapy because your situation calls for it. Come here any time to rant and ask for support; we will do our feeble best to give it to you.

But do know that it is possible to feel better, to regain control of your life, to kick that gluten in the butt and live a full and satisfying life. I'm not saying it won't take some work, but you CAN do it. Keep coming back and asking questions and for support and we will go all out for you; you deserve a break!

Here's a big {{{hug}}}} for you.

JNBunnie1 Community Regular

Miss Em, I tried to send you a PM but you have it disabled. Would you be willing to Pm me with your email address,

or just Pm me?

There are some things I'd like to share with you!

Miss Emily Apprentice
Miss Em, I tried to send you a PM but you have it disabled. Would you be willing to Pm me with your email address,

or just Pm me?

There are some things I'd like to share with you!

I couldn't figure out how to message you. But you may send me a message at emilyann1226@aol.com

thanks!

Miss Emily Apprentice
Dear, dear Emily, of course you need support!. What a tough row to hoe! So many fractures with undiagnosed osteoporosis (what was wrong with those docs???) A failed marriage due to celiac, saddled with student loan debt for classes you were too ill to attend, medical bills you can't afford because you can't get a job that will pay for them because you couldn't complete college, hungry trying to afford foods that contain no gluten, dairy or soy. That is a heavy burden to bear. No way do you guilt yourself over that. :rolleyes: Believe me, you have friends here who can try to comprehend what you are going through, but what you are going through is way more than most of us have had to deal with; many of us here find it hard enough to give up eating gluten. You, my dear, have been overburdened. I am so glad you are in therapy because your situation calls for it. Come here any time to rant and ask for support; we will do our feeble best to give it to you.

But do know that it is possible to feel better, to regain control of your life, to kick that gluten in the butt and live a full and satisfying life. I'm not saying it won't take some work, but you CAN do it. Keep coming back and asking questions and for support and we will go all out for you; you deserve a break!

Here's a big {{{hug}}}} for you.

Thank you so much for your support. It is always tough when there seems to be no means to an end... but it definently helps to have this group!


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VioletBlue Contributor

I can sympathize. I'm certainly not 23, just over twice that actually, but I'm frustrated by what my body cannot do. At one point, years before I was diagnosed I spent a year or so falling down a lot. I'd be walking along and just suddenly be on my knees with no memory of tripping. I retrospect I now realize it was a form of nerve damage. But the damage repeated falls did to me knees has left me in pain just trying to walk up and down stairs. I'll never be able to jog again and I spent a good part of my 20's and 30's as a runner. I miss it. I walk on a treadmill now but even that is a challenge because I suffer from gluten ataxia and have balance issues, not to mention speech issues - I used to be a classical announcer, and issues with writting and language as well.

I don't know that I have an insight that will help. All I can say is that I understand the frustration. I was raised to believe I could do anything I set my mind to. That was the way I lived a good deal of my life. It's hard to accept that it's no longer true.

I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do. And I guilt myself all the time saying "this could be worse, you could have cancer!." But, that certainly does not help. So, I am in therapy, working closely with my doctor and reading all I can about my options. However, I really need to hear that someone gets where I am coming from. That it is tough to want to do so much but only be able to do a little. So, kind words anyone?

PS. Sorry this is a bit of a rant but I need support!

cyberprof Enthusiast
I was diagnosed with Celiac almost two years ago now. It is thought that heart surgery at age six to repair a heart murmur triggered my Celiac. So, ever since I can remember I have been sick. Daily nausea, fatique, endometriosis, depression, bone pain, muscle weakness, severe diarreaha, cramps, frequent hospital and doctors visits, absences etc and too numerous diagnosis to list. I had always napped in the afternoon to be able to handle evening activities and was never able to work while in school. In highschool I suffered from a misdiagnosed spinal fracture, ankle fractures, and arm fractures due to undiagnosed osteoporosis. Finally I received a Spinal Fusion to correct my petical fracture but continued to have back pain after physical therapy was discontinued. I barely made it through four years of college before I was forced to quit after failing several courses based only upon absences. I was married and subsequently divorced because of my chronic illnesses. I finally was diagnosed with Celiac but struggled for over a year before I felt any relief. I tell you all this because now, at 23 I am lost. The good news being I have found new hope with a diagnosis of Celiac, reversed my osteoporosis, and have dramatically reduced the diareaha ailments. However, I have no money to go back to school, student loan debt equivalent to a Bachelor's degree with only 50 credits, medical bills piling up and little income. I work part time as a nanny, but find I am extremely limited in the amount of time and labor I can put forth before my body rebels. I feel so stuck because I cannot move forward. I am always hungry because it is difficult to afford foods that don't make me ill (at this point no gluten, dairy, soy, additives, etc. the list is very short) and I have a difficult time getting my family to buy these items. (Although my home is gluten-free, thanks to my family :) ) I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do. And I guilt myself all the time saying "this could be worse, you could have cancer!." But, that certainly does not help. So, I am in therapy, working closely with my doctor and reading all I can about my options. However, I really need to hear that someone gets where I am coming from. That it is tough to want to do so much but only be able to do a little. So, kind words anyone?

PS. Sorry this is a bit of a rant but I need support!

Others have given good advice. If you decide that you want to - cheaply - continue and try to get a college degree, let me know and I can help with that. I teach classes for colleges that offer online degrees, some very cheaply. I'm talking about accredited colleges, not diplomas that you "buy". I have sources that can help you plan a degree (for free), and you can probably get some credit via testing - like AP tests for adults - so that you can finish faster and cheaper.

Online degrees are expanding, mainly because you can do the work from home. That means you can pace yourself and do the work when you have energy. It might be the best way to finish the degree (if you want to) so you can earn more money and find a career that is right for you. There are many different programs at many colleges.

Best of luck to you in your healing.

Miss Emily Apprentice
Others have given good advice. If you decide that you want to - cheaply - continue and try to get a college degree, let me know and I can help with that. I teach classes for colleges that offer online degrees, some very cheaply. I'm talking about accredited colleges, not diplomas that you "buy". I have sources that can help you plan a degree (for free), and you can probably get some credit via testing - like AP tests for adults - so that you can finish faster and cheaper.

Online degrees are expanding, mainly because you can do the work from home. That means you can pace yourself and do the work when you have energy. It might be the best way to finish the degree (if you want to) so you can earn more money and find a career that is right for you. There are many different programs at many colleges.

Best of luck to you in your healing.

I would be interested in more information please contact me, emilyann1226@aol.com thanks!

ravenwoodglass Mentor
I couldn't figure out how to message you. But you may send me a message at emilyann1226@aol.com

thanks!

Hi Emily Just wanted to let you know if you want to message someone put your cursor just to the right of that persons name. You will see a little arrowheady looking thing, click on that and a pull down menu will appear and you will see the words 'send message'. If you click on that you will be able to send them a private message. I do need to note that for new members there is a certain number of posts that you have to have before you can do so. If you ask in the technical section someone may know how many you need before you can PM. There are also restrictions on how many PMs can be sent in a certain time frame, I think it is one an hour but not sure.

Hang in there, it is very tough especially at first but we are all here for you. Your not alone in your struggles.

cyberprof Enthusiast

Emily, I sent you an email via your AOL email address.

~Laura

shirleyujest Contributor

Hugs to you sweetie! You have gone through a lot of hardship in your young (relatively) life! It's a tough road you've been on, also assuming whatever health problems led to your heart surgery, you've really never been well. Yet! Yet is the operative word. It sounds like you are on the right path. Anyone who has completed 50 credits and works part-time as a nanny with these obstacles is very strong, not to mention you've dealt with marriage and divorce. You just need to reframe the situation and view things that way: you are a survivor. I love your quote from ER. This reflects who you are inside.

Your healing will not happen overnight. Just keep learning about food, nutrition and cooking so you can eat healthy meals. Do what you can and know that it is enough. I'm glad you have a family there for you. If you can, like you're living with your parents and don't need to pay rent, then overpay your student loans until they're gone or almost gone, and save up money to finish college. Finish up at a public university. I didn't get my degree until age 27 b/c my folks had not saved money. So I put myself through college, first at a junior college then at a very good public univ. It can be done. Be your most stubborn self and you'll be fine.

Miss Emily Apprentice
Emily, I sent you an email via your AOL email address.

~Laura

Hi Laura, I just replied! Thank you so much!

Miss Emily Apprentice
Emily, I sent you an email via your AOL email address.

~Laura

Thnak you!

Miss Emily Apprentice

I wanted to thank everyone for your replies! I can't tell you how much it means to have your support! :)

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