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Terri Caissie I just wanted to stop by the WPTavern and Thank everyone personally for all that you did for my campaign. Jeff thank you for sharing my story here in the WPTavern. And to everyone else who donated or who just shared to post, thank you. I know this was a bad time of year to ask for money and I’ve never done anything like this before. When I look at the picture Jeff posted it was Dec 11 with $410, I reached my goal this morning Dec 15 of $2500, my heart is touched very deeply and I just can’t express my gratitude enough. There’s a whole lot more to this disease than people realize. My antibodies are eating the neurons in my brain and cerebellum (balance) so I fall a lot, I do mean a lot. This is why I’m in physio all the time. The bad neurons are sent to my muscles, which makes them cramp. Think Charlie Horse only 10 times worse. The cramps can twist my bones to the point of almost breaking. They can break your bones, but I’ve been very lucky, so far no broken bones, but this is very painful, especially in your ankles. You wake up in the middle of the night crying and screaming your head off due to the pain, this is raw nerve pain and sometimes you can’t stand because of it, so there is nothing you can do. There are seizures, if I do too much in one day, about 1/2 day of cleaning or laundry, I’m in bed for 2 days. There are so many symptoms to this disease it’s not funny. We have a word that we use which is called flooding. If I’m in a store and it becomes loud. I stop dead in my tracks, go white as a ghost and almost pass out. My hubby rushes me out of the store, this is why I need musician’s ear plugs. The audiologist said I would hear the person next to me but it would drown out all the background noise. Every 3 weeks I go to the hospital and get 175mg of Solu-Medrol which is a steroid, then I get 90grams in a 900ml solution of peoples antibodies. In that 90grams it’s anywhere from 10,000 to 50,000 peoples antibodies, probably closer to 50, as 100 grams would be 50,000. This treatment costs $16,000 every 3 weeks. They are looking at switching me to every 2 weeks. I will have this treatment for the rest of my life. At some point they are going to put me on chemotherapy drugs. I keep telling hubby, I never know what I’m going to wake up to or even if I’m going to wake up. I fell down the stairs 8 weeks ago and spent 11 hours in the hospital, I only broke a toe and a tiny bone in my left elbow, which only required a sling. The next morning I fell in the bathtub and ended up in the ER again for 10 hours, my brain swelled, it’s the most horrific headache you can have, plus I had a concussion. At one point I told Ed I thought this was my last day on this big blue ball we call Earth. I wasn’t afraid to die and I’m still not. I’ve accepted my lot in life. I had a tumour removed from my spine back in May, they couldn’t tell by the imaging what it was because when they finally got it out, it was encased in a black hard substance that was hard as a rock, this was in the thoracic region, my disease causes tumours in this area. They are call peripheral nerve tumours. Doctors don’t like to operate in the Thoracic area, they had to deflate one of my lungs. I’ve had so many more things go wrong, I just can’t remember them all. I take a ton of pills, 2 different types of anti-seizure meds, anti-depressants, water pills, stomach meds, thyroid meds, asthma meds and a lot more. Ed keeps it all straight for me in a very big 7 day 4 times a day pill container, lol. My TSH has now gone out of whack, it’s supposed to be 0.3 to 4.0. I’m 43.99, geez. The bad antibodies have eaten half of my pancreas, so now I have Autoimmune pancreatitis. They say I have a really good chance of getting Type 1 diabetes, not Type 2 which runs in my family, but what kids get, Type 1. I’m sorry this is such a long run on scatter brained post, but this is how my brain works now. I have to get things out when I think about them, otherwise I forget them. The reason I’ve told you all this is I hope you will support the HESAonline.org website. They are putting a book together, my story will be in it, along with others. My story was written when I was first diagnosed, but I’ve been mis-diagnosed my entire life. They think I was around 5 when I got this and I’ve pushed myself all my life. Every doctor kept telling me I was normal, so this is what I though normal was. The book will also have research in it on HE/SREAT and they interviewed doctors from all over the US and even my specialist here in Canada. The goal of HESAonline.org is to have several of these books in every single University that teaches Medicine and every teaching hospital in North America. That’s a lot of University’s and hospitals and a lot of books. I hope you can find it in your hearts to help them out at http://www.HESAonline.org . If nothing else, please share the link with friends and family. Once again thank you to everyone for all that you have given me. Take care. Terri Caissie
Terri Caissie
I just wanted to stop by the WPTavern and Thank everyone personally for all that you did for my campaign. Jeff thank you for sharing my story here in the WPTavern. And to everyone else who donated or who just shared to post, thank you. I know this was a bad time of year to ask for money and I’ve never done anything like this before. When I look at the picture Jeff posted it was Dec 11 with $410, I reached my goal this morning Dec 15 of $2500, my heart is touched very deeply and I just can’t express my gratitude enough.
There’s a whole lot more to this disease than people realize. My antibodies are eating the neurons in my brain and cerebellum (balance) so I fall a lot, I do mean a lot. This is why I’m in physio all the time. The bad neurons are sent to my muscles, which makes them cramp. Think Charlie Horse only 10 times worse. The cramps can twist my bones to the point of almost breaking. They can break your bones, but I’ve been very lucky, so far no broken bones, but this is very painful, especially in your ankles. You wake up in the middle of the night crying and screaming your head off due to the pain, this is raw nerve pain and sometimes you can’t stand because of it, so there is nothing you can do. There are seizures, if I do too much in one day, about 1/2 day of cleaning or laundry, I’m in bed for 2 days. There are so many symptoms to this disease it’s not funny. We have a word that we use which is called flooding. If I’m in a store and it becomes loud. I stop dead in my tracks, go white as a ghost and almost pass out. My hubby rushes me out of the store, this is why I need musician’s ear plugs. The audiologist said I would hear the person next to me but it would drown out all the background noise. Every 3 weeks I go to the hospital and get 175mg of Solu-Medrol which is a steroid, then I get 90grams in a 900ml solution of peoples antibodies. In that 90grams it’s anywhere from 10,000 to 50,000 peoples antibodies, probably closer to 50, as 100 grams would be 50,000. This treatment costs $16,000 every 3 weeks. They are looking at switching me to every 2 weeks. I will have this treatment for the rest of my life. At some point they are going to put me on chemotherapy drugs. I keep telling hubby, I never know what I’m going to wake up to or even if I’m going to wake up. I fell down the stairs 8 weeks ago and spent 11 hours in the hospital, I only broke a toe and a tiny bone in my left elbow, which only required a sling. The next morning I fell in the bathtub and ended up in the ER again for 10 hours, my brain swelled, it’s the most horrific headache you can have, plus I had a concussion. At one point I told Ed I thought this was my last day on this big blue ball we call Earth. I wasn’t afraid to die and I’m still not. I’ve accepted my lot in life. I had a tumour removed from my spine back in May, they couldn’t tell by the imaging what it was because when they finally got it out, it was encased in a black hard substance that was hard as a rock, this was in the thoracic region, my disease causes tumours in this area. They are call peripheral nerve tumours. Doctors don’t like to operate in the Thoracic area, they had to deflate one of my lungs. I’ve had so many more things go wrong, I just can’t remember them all. I take a ton of pills, 2 different types of anti-seizure meds, anti-depressants, water pills, stomach meds, thyroid meds, asthma meds and a lot more. Ed keeps it all straight for me in a very big 7 day 4 times a day pill container, lol. My TSH has now gone out of whack, it’s supposed to be 0.3 to 4.0. I’m 43.99, geez. The bad antibodies have eaten half of my pancreas, so now I have Autoimmune pancreatitis. They say I have a really good chance of getting Type 1 diabetes, not Type 2 which runs in my family, but what kids get, Type 1. I’m sorry this is such a long run on scatter brained post, but this is how my brain works now. I have to get things out when I think about them, otherwise I forget them. The reason I’ve told you all this is I hope you will support the HESAonline.org website. They are putting a book together, my story will be in it, along with others. My story was written when I was first diagnosed, but I’ve been mis-diagnosed my entire life. They think I was around 5 when I got this and I’ve pushed myself all my life. Every doctor kept telling me I was normal, so this is what I though normal was. The book will also have research in it on HE/SREAT and they interviewed doctors from all over the US and even my specialist here in Canada. The goal of HESAonline.org is to have several of these books in every single University that teaches Medicine and every teaching hospital in North America. That’s a lot of University’s and hospitals and a lot of books. I hope you can find it in your hearts to help them out at http://www.HESAonline.org . If nothing else, please share the link with friends and family. Once again thank you to everyone for all that you have given me.
Take care. Terri Caissie
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