Disabled But Not Yet on Disability
Donation protected
I knew something was wrong with my body. Horrible attacks of vertigo. Violent fatigue that felt like I had been slipped a mickey. Intense, roaming pain, always pain. I was misdiagnosed (I eventually learned) with rheumatoid arthritis, and I fought and fought against the symptoms in order to work, dosing with sulfas and steroids, over and over.
In August of 2013, I started a wonderful job in my chosen field, and I fought my body every step of the way. Some Fridays, I would come home, and my husband would help me to bed, as I shed clothes along the way and took my medication. But I was doing it, I was winning the fight.
And then the abdominal pains started.
They were so vicious that I couldn't eat, could barely bend from the waist.
Fight, work, medical exam, collapse. Over and over.
The new pain was being caused by uterine cysts and an ovarian tumor, and the cysts and tumor's growth were exacerbated by autoimmune disease--but not RA, as we were to discover.
I returned to work after the hysterectomy, and my body felt--wrong. Every symptom--vertigo, brain fog, fatigue, confusion, pain--was even worse than before.
August 11, 2014, I was at a worksite, and was putting my bags in my car--and the entire left side of my body lit up with ferocious pain. I don't know how I drove home.
But I did, and because my definition of a good day is so much different than the norm, I got up the next morning, and went back to work.
I don't remember much about that day. I remember my thoughts as if they were moving through molasses to reach me. I remember thinking walking to one of our office nurses and just looking at her, unable to verbalize that I needed help--and her exclamation when she saw my face. I remember chewing baby aspirin. I remember the ambulance, and nitro under my tongue, and the top number of my blood pressure being 198.
I have not been able to return to work, or drive a car, or have any independence, for the past year. Today is the anniversary of that cardiac event. On a good day, my pain scale is a 4. Yes, that means every moment I feel pain.
After many, many doctor's visits, tests, referrals, and bills, my rediagnosis is Ehlers-Danlos Syndrome Type III and fibromyalgia. EDS III is the hypermobility type. Basically, it means my joints cannot be trusted, and my collagen is malformed. Collagen is in all 12 systems of the body, so I have skin problems, execretion problems, tremors, you name it. As for my joints, they hyperextend, and I have a note that accompanies my alert bracelet for EMS to be aware, so that they don't dislocate joints or break ribs while performing necessary services--I'm as fragile as a hemophiliac, only it's my joints, not my blood.
I am in that trench between qualifying for disability and receiving it. I have started the long and grueling application process; who knows when it will end. My husband curtailed his work hours, and finally now works from home, so that he can see to my daily needs. We never know until I wake up if, on any given day, if I will need assistance with daily living tasks on that day.
I am doing everything I can to improve my situation--doing everything the doctors tell me to do, keeping every appointment, attending and participating in physical rehabilitation, wearing my dreadful CPAP every night. Unfortunately, there is no income stream for self-care.
All I am asking for is help with medical bills and daily living expenses while we wait out the disability process. I can't bear to see my family worry.
Thank you. If you are reading this, whether you can help or not, I sincerely thank you for giving me your time, and I love you.
In August of 2013, I started a wonderful job in my chosen field, and I fought my body every step of the way. Some Fridays, I would come home, and my husband would help me to bed, as I shed clothes along the way and took my medication. But I was doing it, I was winning the fight.
And then the abdominal pains started.
They were so vicious that I couldn't eat, could barely bend from the waist.
Fight, work, medical exam, collapse. Over and over.
The new pain was being caused by uterine cysts and an ovarian tumor, and the cysts and tumor's growth were exacerbated by autoimmune disease--but not RA, as we were to discover.
I returned to work after the hysterectomy, and my body felt--wrong. Every symptom--vertigo, brain fog, fatigue, confusion, pain--was even worse than before.
August 11, 2014, I was at a worksite, and was putting my bags in my car--and the entire left side of my body lit up with ferocious pain. I don't know how I drove home.
But I did, and because my definition of a good day is so much different than the norm, I got up the next morning, and went back to work.
I don't remember much about that day. I remember my thoughts as if they were moving through molasses to reach me. I remember thinking walking to one of our office nurses and just looking at her, unable to verbalize that I needed help--and her exclamation when she saw my face. I remember chewing baby aspirin. I remember the ambulance, and nitro under my tongue, and the top number of my blood pressure being 198.
I have not been able to return to work, or drive a car, or have any independence, for the past year. Today is the anniversary of that cardiac event. On a good day, my pain scale is a 4. Yes, that means every moment I feel pain.
After many, many doctor's visits, tests, referrals, and bills, my rediagnosis is Ehlers-Danlos Syndrome Type III and fibromyalgia. EDS III is the hypermobility type. Basically, it means my joints cannot be trusted, and my collagen is malformed. Collagen is in all 12 systems of the body, so I have skin problems, execretion problems, tremors, you name it. As for my joints, they hyperextend, and I have a note that accompanies my alert bracelet for EMS to be aware, so that they don't dislocate joints or break ribs while performing necessary services--I'm as fragile as a hemophiliac, only it's my joints, not my blood.
I am in that trench between qualifying for disability and receiving it. I have started the long and grueling application process; who knows when it will end. My husband curtailed his work hours, and finally now works from home, so that he can see to my daily needs. We never know until I wake up if, on any given day, if I will need assistance with daily living tasks on that day.
I am doing everything I can to improve my situation--doing everything the doctors tell me to do, keeping every appointment, attending and participating in physical rehabilitation, wearing my dreadful CPAP every night. Unfortunately, there is no income stream for self-care.
All I am asking for is help with medical bills and daily living expenses while we wait out the disability process. I can't bear to see my family worry.
Thank you. If you are reading this, whether you can help or not, I sincerely thank you for giving me your time, and I love you.
Organizer
Carla Hufstedler
Organizer
Bryant, VA
