Meghan's Medical Fund
Donation protected
Invisible illness and how it is affecting my life.
I am trying to raise money to survive until I get approved for Social Security Disability or I improve physically to the point where I can go back to work, which would require a cure or new treatment for fibromyalgia. I am embarassed and ashamed that I need to ask for help. I am the type of person that would like to help others. On my good days I usually end up making myself sick trying to help someone else that needs it. My husband is constantly telling me to quit pushing myself so hard when it is not required of me. Most recently I used my last bit of fuel to get to a location to help search for a missing child and made myself very ill in the process. I can do a good bit on a good day when I force myself, but then I suffer with all over body pain for days, migraines, vomiting, major heat intolerence, sensory issues, and emotional distress.
I have to visit pain management monthly to maintain my medications and currently I cannot even afford my copays for those visits or my medications, so my husband has me put those on his credit card. We pay for health insurance, or I would not be able to go to the doctor at all. I need two MRIs to verify my herniated disks and sponylosis. One for my neck and one for my lower back. Those copays are $125 each. I keep trying to get them ordered and approved at the same time so I only have to pay one copay, but the insurance company keeps giving me the run around. They will approve one, and deny the other and while I try to get the other one approved, the one that is already approved will expire. I am to the point where I will basically have to pick one, when I need both. I need it to get treatment, and I need it to prove my disability. I am in a total catch twenty two. I am too broke to get the evidence I need to get disability and without the disaility I have no income to pay my medical bills. I have pretty severe depression because of my constant pain and financial difficulties, but I cannot see a psychiatrist because that would be another copay that I cannot afford. I am currently in therapy which I only managed recently and I am not sure how long I can keep that up. I feel I need to be able to talk to someone about these problems more than I need to see a psychiatrist that will only put me on another medication I cannot afford. Due to my fibromyalgia I have extreme chemical sensitivity, which means that nine out of ten medications they have tried me on have caused me more pain in the form of migraines, or vomiting, or Parkinsons-like tremors, to the point I cannot even brush my own teeth.
At one time about four years ago I was on so much oral pain medication that it caused severe reflux, GERD, and this caused me to develop a hiatus hernia. Sometimes I feel like I am having a heart attack from the esophageal spasms, and I choke often on my own saliva when this happens which is very scary. When this started I was finally referred to a pain management physician who understood the damage that was being done from the pain medications that I was taking orally. These medications were not even controlling my pain to a point where I could do much more than get out of bed to go to the restroom. My current pain management physician put me on a fentanyl patch which finally gave me some pain relief without the irritation to my stomach and my esophagus. Finally, I was able to start cooking meals again on occasion and getting out of my bed more often and even getting out and walking to get some exercise. I still cannot do general household chores like laundry or standing at the sink to wash dishes without extreme back, leg, and abdominal pain, but at least I can get out of bed. Then my pain physician gave me some spinal and sacral injections to see if another procedure would help my back pain. It helped for about two weeks so he did the other procedure called RFL or radio frequency lesioning, killing a nerve in my lower back. I finally got rid of some of the burning pain in my privates area and down the back of my leg. Unfortunately, there is nothing they can do for the over 60 symptoms, including all over body pain, caused by my fibromyalgia.
I have done so many things to try and improve my own health and reduce symptoms. I do not eat any processed foods. No sodas, no chips, no canned goods. I eat fresh vegetales and meats only. I try to eat organic, to avoid chemicals, but it is nearly mpossible to do that when I have less than $50 every two weeks for groceries. Sometimes I do not even have that. I get $16 in food stamps. My husband works so hard, and neither of us spend any money on anything that is not required. We have not gone to a movie in over five years, which it does not matter because I cannot sit through a movie anyway. We do not rent movies, or go out. I am so glad that my children no longer live with us, but my three year old grand daughter may have to come live with me eventually. My son is a soldier in the US Army and he helps when he can, but soldiers do not get paid all that well. On my good days I try to make decorative crafts for gifts for my friends and family. My daughter is struggling with her own life and while I am very sad that I cannot help her, she has chosen her own way and there is nothing I can do about that. I could go on and on about all of the surgeries I have had and the amount of times I have had cancer, but none of that really matters. I made it through and I am very thankful to be cancer free at this time. I am blessed to have a wonderful husband and children. I wish I could be a more useful person in life. I worked hard for many years and would love to still be able to, but that is not the path that has been chosen for me. I will continue to be good to others and help others in any way that I am able and I despise being in a position to need help. I would be so grateful for any help that anyone can give me. I would be thankful even just to get well wishes from people. I just wish I could stock my refrigerator and pay off some medical bills, and feel like I was surviving. I wish I coud get the medical tests I need to prove my disability to Social Security. I should already have plenty of evidence with two herniated disks, fibromyalgia, and spondylosis, that have shown on MRIs from many years ago, but they do not seem to think that is enough. Fibromyalgia is one of those illnesses that there is no physical evidence of beyond the tender points that the physicians use for diagnosis. Even though I have a really hard time remembering my words, and sitting or standing for more than 15 minutes, and even dealing with people because they do not understand that I am sick, because they cannot see my illness. I have days on end when I can barely keep my eyes open because I am so severely fatigued. I do not sleep well because I am constantly having to move because of the pain from being in one position too long. I try to stay cheerful and keep my sense of humor, but someties it is very difficult.
I am currently trying to train my dog on my good days to be a companion animal because I know I will never be able to afford to pay to get her trained. She already follows me to the restroom and stands in one place while I use her back to push myself back into a standing position when my legs go numb from sitting too long. After my husband, she is my best friend, and she keeps my spirits up during all the hours I am home alone while my husband works all the time. I could continue to write for hours, but for now I will stop. Mostly because my hands are hurting so bad. I want to thank anyone who even takes the time to read this. Even if you do not help financially, at the very least I know there is one more person out there that knows a little bit more about fibromyalgia, and is a good person simply for caring enough to read my story. Have a wonderful day. Thank you for taking time out to take an interest in my struggle.
I am attaching a link to fibromyalgia symptoms in case you wish to know more about this invisible illness.
Fibromyalgia Network Treatment and Research News
I am trying to raise money to survive until I get approved for Social Security Disability or I improve physically to the point where I can go back to work, which would require a cure or new treatment for fibromyalgia. I am embarassed and ashamed that I need to ask for help. I am the type of person that would like to help others. On my good days I usually end up making myself sick trying to help someone else that needs it. My husband is constantly telling me to quit pushing myself so hard when it is not required of me. Most recently I used my last bit of fuel to get to a location to help search for a missing child and made myself very ill in the process. I can do a good bit on a good day when I force myself, but then I suffer with all over body pain for days, migraines, vomiting, major heat intolerence, sensory issues, and emotional distress.
I have to visit pain management monthly to maintain my medications and currently I cannot even afford my copays for those visits or my medications, so my husband has me put those on his credit card. We pay for health insurance, or I would not be able to go to the doctor at all. I need two MRIs to verify my herniated disks and sponylosis. One for my neck and one for my lower back. Those copays are $125 each. I keep trying to get them ordered and approved at the same time so I only have to pay one copay, but the insurance company keeps giving me the run around. They will approve one, and deny the other and while I try to get the other one approved, the one that is already approved will expire. I am to the point where I will basically have to pick one, when I need both. I need it to get treatment, and I need it to prove my disability. I am in a total catch twenty two. I am too broke to get the evidence I need to get disability and without the disaility I have no income to pay my medical bills. I have pretty severe depression because of my constant pain and financial difficulties, but I cannot see a psychiatrist because that would be another copay that I cannot afford. I am currently in therapy which I only managed recently and I am not sure how long I can keep that up. I feel I need to be able to talk to someone about these problems more than I need to see a psychiatrist that will only put me on another medication I cannot afford. Due to my fibromyalgia I have extreme chemical sensitivity, which means that nine out of ten medications they have tried me on have caused me more pain in the form of migraines, or vomiting, or Parkinsons-like tremors, to the point I cannot even brush my own teeth.
At one time about four years ago I was on so much oral pain medication that it caused severe reflux, GERD, and this caused me to develop a hiatus hernia. Sometimes I feel like I am having a heart attack from the esophageal spasms, and I choke often on my own saliva when this happens which is very scary. When this started I was finally referred to a pain management physician who understood the damage that was being done from the pain medications that I was taking orally. These medications were not even controlling my pain to a point where I could do much more than get out of bed to go to the restroom. My current pain management physician put me on a fentanyl patch which finally gave me some pain relief without the irritation to my stomach and my esophagus. Finally, I was able to start cooking meals again on occasion and getting out of my bed more often and even getting out and walking to get some exercise. I still cannot do general household chores like laundry or standing at the sink to wash dishes without extreme back, leg, and abdominal pain, but at least I can get out of bed. Then my pain physician gave me some spinal and sacral injections to see if another procedure would help my back pain. It helped for about two weeks so he did the other procedure called RFL or radio frequency lesioning, killing a nerve in my lower back. I finally got rid of some of the burning pain in my privates area and down the back of my leg. Unfortunately, there is nothing they can do for the over 60 symptoms, including all over body pain, caused by my fibromyalgia.
I have done so many things to try and improve my own health and reduce symptoms. I do not eat any processed foods. No sodas, no chips, no canned goods. I eat fresh vegetales and meats only. I try to eat organic, to avoid chemicals, but it is nearly mpossible to do that when I have less than $50 every two weeks for groceries. Sometimes I do not even have that. I get $16 in food stamps. My husband works so hard, and neither of us spend any money on anything that is not required. We have not gone to a movie in over five years, which it does not matter because I cannot sit through a movie anyway. We do not rent movies, or go out. I am so glad that my children no longer live with us, but my three year old grand daughter may have to come live with me eventually. My son is a soldier in the US Army and he helps when he can, but soldiers do not get paid all that well. On my good days I try to make decorative crafts for gifts for my friends and family. My daughter is struggling with her own life and while I am very sad that I cannot help her, she has chosen her own way and there is nothing I can do about that. I could go on and on about all of the surgeries I have had and the amount of times I have had cancer, but none of that really matters. I made it through and I am very thankful to be cancer free at this time. I am blessed to have a wonderful husband and children. I wish I could be a more useful person in life. I worked hard for many years and would love to still be able to, but that is not the path that has been chosen for me. I will continue to be good to others and help others in any way that I am able and I despise being in a position to need help. I would be so grateful for any help that anyone can give me. I would be thankful even just to get well wishes from people. I just wish I could stock my refrigerator and pay off some medical bills, and feel like I was surviving. I wish I coud get the medical tests I need to prove my disability to Social Security. I should already have plenty of evidence with two herniated disks, fibromyalgia, and spondylosis, that have shown on MRIs from many years ago, but they do not seem to think that is enough. Fibromyalgia is one of those illnesses that there is no physical evidence of beyond the tender points that the physicians use for diagnosis. Even though I have a really hard time remembering my words, and sitting or standing for more than 15 minutes, and even dealing with people because they do not understand that I am sick, because they cannot see my illness. I have days on end when I can barely keep my eyes open because I am so severely fatigued. I do not sleep well because I am constantly having to move because of the pain from being in one position too long. I try to stay cheerful and keep my sense of humor, but someties it is very difficult.
I am currently trying to train my dog on my good days to be a companion animal because I know I will never be able to afford to pay to get her trained. She already follows me to the restroom and stands in one place while I use her back to push myself back into a standing position when my legs go numb from sitting too long. After my husband, she is my best friend, and she keeps my spirits up during all the hours I am home alone while my husband works all the time. I could continue to write for hours, but for now I will stop. Mostly because my hands are hurting so bad. I want to thank anyone who even takes the time to read this. Even if you do not help financially, at the very least I know there is one more person out there that knows a little bit more about fibromyalgia, and is a good person simply for caring enough to read my story. Have a wonderful day. Thank you for taking time out to take an interest in my struggle.
I am attaching a link to fibromyalgia symptoms in case you wish to know more about this invisible illness.
Fibromyalgia Network Treatment and Research News
Organizer
Meghan Alexander
Organizer
Jacksonville, FL
