Hi, my name is bimber9. I was diagnosed with a rare blood disease called Amyloidosis three years ago. I also used to be a journalist, and I believe strongly in the power of stories. I would be inspired to read more about how other patients are navigating living with a chronic disease, but I would also like to help others tell their stories.
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Hi, my name is Rosaline Callaghan. I'm here because I have Hereditary Amyloidosis T60A. With its origins in a fifteen-mile stretch of coastline in North-West Donegal, Ireland, it is often referred to as 'Donegal Amy'.
Hi, my name is knc72. I've been diagnosed was with AL Amyloidosis on March 21at of this year, my 50h birthday. I'm in my 3 cycle of chemo. I am excited to communicate with, and learn from, other people going through the same thing,
#MightyTogether #BipolarDisorder #Amyloidosis
Hi, my name is Interplanetarywombat. I’m new to The Mighty and look forward to sharing my story.
Refused treatment beginning of the year and now I read more on my condition **sigh**
I have a rare heart disease cardiac amyloidosis and they wanted to do a heart catheterization (ablation) on me, inject dye and fix blockages or anything. I declined that in January. I read an article saying something about if left untreated you may live two months to four years. Anyways, I don’t tell anyone about it much. It’s hard to find strength to go through things alone. I already have multiple chronic illnesses, so I just haven’t decided my plan yet. What if I missed the window to do something?! My children don’t get that I am even sick.
So I make the lumps that grow from within muscle tissue when there is minor trauma to my muscles. I have to go to a Neuromuscular Neurologist in October to see about Amyloidosis and Sarcoidosis. I think my doc is questioning if the lumps are an odd presentation of either condition. If this doctor cannot help me then it may be to Mayo or somewhere else. If we can find a doctor who may have seen this before.
I belong to a pain clinic that is not prescribing narcotics. The docs there are very helpful as well. The Naturopath has mapped out the lumps. He thinks there is a possibility that the connective tissue in the muscle starts growing uncontrolled. He has never seen anything like it. Nor has any other doctor I have seen.
Now my insurance through the state is set to change. If it does I will have to pay all co pays and Co insurance, pharmacy bills and Medicaid pays my Medicare payment only. I am in a scary place.
Hi there. I am 58 yo and don’t really remember life without pain. I had burns on my arms from pulling the iron down on myself at 14 months resulting in 2nd and 3rd degree burns. Thankfully it landed on my arms. There was no understanding that at this young age the neuropathways for processing pain are very fragile. An injury like that and the following treatment is now understood to blow apart neuropathways. That set me up for experiencing pain differently.
I was constantly ill with bronchitis. Well maybe not constantly but 3 times a year. And many other illnesses. I became aware of subluxing knee caps at the age of 6. Reactive low blood sugar that has a 1969 understanding of like blood sugar at 6. My brother started punching and kicking me at 6. He is 5 years older than me. My parents never told him to not hit s a girl. He figured it out as an adult and informed me very clearly he taught his boys to never hit a female. I am proud of him for learning on his own. We all learned alot on our own.
I had surgery on my knees in 1975, 1976, 1979 and 1980. I was rushed to the ER for allergies at 14 with what was thought to be anaphylaxis and again in 1980 with dehydration from mono. But I managed to be in band during some of these years, swim for 8 months on a city league team and do white 3 water after trips with a youth group over 3 years. I worked at 14. Had to stop at 16 and couldn’t manage college until 20 years after graduating due to needing a break from school after graduating. I had 2 employment goals: 1. Work in the arts. 2. Help people. These were kind of broad. I became a photo printer in 1985 and graduated to custom photo printing in a darkroom. I worked in Human Resources for a few years as an intake specialist helping people without disabilities train for specific jobs and gain employment in the same company. I became a phlebotomist then moved into medical assisting working in a large clinic. We had practitioners who did family practice and ob, internal medicine and even geriatrics. I helped with newborns literally all the way through doing from old age. My final job was to care for my sister who has early onset dementia. She passed in 2017. My body gave out a month later.
I had developed a lot of diagnosises over the years including Dysautonomia and either Ehlers Danlos or Hypermobile Joint Syndrome. I have many comorbidities of both. I have a condition that no one has yet to be able to diagnose. It causes lumps that grow from within my muscles and make my muscles spasm. Some are visible, others are palpable. They seem to grow from minor trauma. One thought is that the connective tissue’s started to grow and grow and grow uncontrollably. Without a biopsy we will not know. I see a neuromuscular neurologist in October. I also need to be checked for Amyloidosis and Sarcoidosis.
I do get that life is very hard. But I love to enjoy everything possible anyways. Color, beauty, sensation. Life.
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