Medical Devices and Treatments Needed

For: Terri Caissie
Hamilton, ON, Canada
Organizer: Terri Caissie
$2,620
of $3,500 goal.
Raised by 61 donors
74% Complete
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The Story

Hi my name is Terri and I have a very rare brain disease that was diagnosed on January 22, 2015. It's called Hashimoto's Encephalopathy (Autoimmune) with Progressive Cerebella Ataxia. Yes I know a mouthful. Basically my own antibodies are attacking my body. Currently I'm looking for approximately $2,500 for Medical Devices and Treatments. 
  • I have Vitiligo which is an autoimmune skin condition where the antibodies attack my pigment, so I have white spots.
  • I have Autoimmune Thyroiditis, where my antibodies attacked my Thyroid.
  • I have Autoimmune Pancreatitis where my antibodies have attacked approximately 1/2 of my pancreas and I have a very high probability of ending up with Type 1 Diabetes, yes you read that right, Type 1 and I'm 56 years old.
  • My antibodies are also attacking the neurons in my Brain and in my Cerebellum. The Cerebella Ataxia means I lose all balance of my body. I fall a lot, I do mean a lot.
My last 2 falls were back to back. One on a Sunday down the stairs basically taking out my right leg. My physio therapist believes I've done some severe damage to my right knee, so I'm having an UltraSound next week. The following morning I fell in my shower/bathub. My husband had to pull me out onto the floor as he couldn't get me to stand up. I hit about a 4 inch strip right where my cerebellum is, I got a concussion, I couldn't stay awake for the life of me. In fact sitting in the ER waiting on my Cat Scan, I told my husband I thought this was my last day on this big blue ball we call Earth. I was so sure I was going to die, but I was calm and peaceful about it as well, probably because I couldn't stay awake. This stayed with me for a few days, but I also had a full blown mind swelling HE headache, wow, all I can say is I've never experienced pain like that before.

There are all kinds of symptoms to HE,
  • I stutter when I meet new people.
  • I can type words backwards without even knowing it.
  • I say words backwards in sentences.
  • I don't remember what happened 5 seconds ago.
  • My short term memory is going fast.
  • I've lost my basic math skills, I can no longer, add, subtract, multiply or divide.
  • My medications can ruin my kidneys
  • I'm just falling apart one day at a time.
So lets get down to the nitty gritty...I need money, I'm totally out of money.
  • The CCAC here in Canada says I need a walker, I found out it will be approximately $700 plus 13% tax.
  • I'm in physiotherapy for my knee which is $65 a treatment...twice a week.
  • I also need massage, did I tell you my muscles never stop moving, so I cramp a lot and my muscles are hard as rocks. Well massage is $90 an hour.
  • I also need musicians earplugs so I can go into busy grocery stores. Right now if I hear a lot of noise or certain frequencies, I want to pass out.

I've already receive $300 from a dear friend which will go towards my walker. Right now I'm starting small, my walker, my physio and my massage and ear plugs. Oh the CCAC also said I need walk in showers in both bathrooms, these are really expensive, but we will wait to get to that. I will put a video up later so you can see me, to see who you are donating to and to tell you all the symptoms I have...my husband has a lot of them written down for me, because I don't remember them all until one happens. Oh yes, I have seizures too. See I just remembered one. I hope you can find it in your hearts to help me out. I've never asked anyone for money before, so this is all new to me. But it's what I need to do to survive as I can no longer work.

Thanks for listening to me.

God Bless

Terri

Fundraiser Updates

Posted on December 17, 2015

Posted on December 17, 2015

To Anonymous who gave me $40 and has Lupus. First of all, you stay strong too. I've known people who have had Lupus and it's definitely not an easy disease to live with either. What I would like to explain is we who have Hashimoto's Encephalopathy and the doctors who treat us, do not like the name. Encephalopathy in a general term means "Brain Disease" The name leads people to think we have Hashimoto's disease or Hashimoto's thyroiditis. Hashimoto's disease and Hashimoto's thyroiditis was discovered in 1912 by a doctor named Dr. Hashimoto. Hashimoto's Encephalopathy was discovered in 1966 by a doctor named Dr. Hashimoto. The Doctors are not related as far as I know. Everyone wants the name changed. Some call it SREAT, which means Steroid Responsive Encephalopathy Associated with Autoimmune Thyroiditis. They way it's associated with the thyroid is TPO, which is Thyroid Peroxidase Antibodies Test, which tells if the antibodies are attacking the Thyroid, which would then make it an Autoimmune disease. Not all Thyroid diseases are autoimmune. I hope that helps.

Take care of yourself.

Terri


Posted on December 14, 2015

Posted on December 14, 2015

Wow, once again I can't Thank the WordPress supporters enough for their generous donations. The WordPress Community is fantastic. Once again Thank you Tom and Jeff for putting the word out there.

Yesterday Ed and I went to Home Depot, we saw an interesting shower, so we inquired about it. This shower had a lip on it otherwise all open, the lady we were speaking too asked me about my cane, so I told her CCAC suggested I get a walk in shower, no lip, for when I end up in a wheel chair. So the one that would fit my bathroom is right around $5000, plus 13% tax. She said to allow around $10,000 to $15,000 to put it in as they will have to pull everything out of the bathroom, move the plumbing and level the entire floor, which means we will need new tile as well and you never know what else they might run into.

For now I'll just keep using the same bathroom with my tub and just keep pulling my right leg in. Oh you don't know about my right leg, most days I can only lift it about 1 inch off the floor, so when doing stairs or the bath tub, I drag it in or up the stairs. Dragging it up the stairs doesn't hurt, but dragging it into the tub makes it cramp and I almost fall every time. We have 2 bathrooms, so that's a whole other story. 

I hope everyone has a wonderful day and to my HE friends may you have a pain free and wonderful day!


Posted on December 12, 2015

Posted on December 12, 2015

I cannot believe the support I've received from the #WordPress Community recently! I just can't say Thank you enough to each and everyone of you! I shared my page with everyone of my friends on FB only 7 actually opened it and only 1 of my friends donated and she's in the same boat as me. She's actually in a worse boat, as she has the same disease as me but her insurance won't pay for IVIG and her house burnt down 4 years ago. Then she received bad legal advice from an attorney about her house. My IVIG treatments are paid for by the government, but unfortunately my massages and physiotherapy are not, neither is the walker I need or the musicians earplugs. I practically live in physio and massage all year long.

My husband and I used to run WPGTA meetups in Mississauga. We used to teach people how to do certain things in #WordPress, as I'm a Corporate Trainer. I couldn't see just having a meetup where there's just a presentation, but let's train people how to do it. That was until my job got in the way with a special project and I was working long hours once again pushing myself to beyond my limits. Then after the special project was done, I found out I had a tumour on my spine. I went downhill from there and went on Short Term Disability, which turned into Long Term Disability.

I keep wanting to cry today because of all of the giving I see going on, unfortunately I'm detached from that emotion, just like I'm detached from most of my emotions.

I give back to my Community at Christmas time and try to do what I can throughout the year. I love to see the looks on total strangers faces as I do something good for them. Well it has come home to me and let me tell you, if I could cry today, I would, as the outpouring of giving from total strangers to me today has been overwhelming to say the least. You have all touched both my heart and my husbands heart. I just hope all of you are also going and finding out more about my disease at http://www.hesaonline.org they also have a donation button as well.

Did you know there are only 200 to 300 cases of Hashimoto's Encelopathy (Autoimmune) with Cerebella Ataxia in the world. I was lucky to get a definitive diagnosis by my blood being sent to Japan. I'm an American living in Canada and in the US this test is not taken advantage of. It would be nice if it were as it would tell the doctors right away if someone has #HE #SREAT or not. Especially in Children. When I read in my groups on Facebook about a child have this, I cringe. We adults can deal with it, but it's a lot for a child to deal with, take it from me, I got it when I was a child or a teenager, that's as close as we can get, but I didn't know I had it as I was mis-diagnosed my entire life. Please read about the disease and think about donating to the cause as well, or write about the disease on your blogs and post the http://hesaonline.org link to bring more awareness to it. 

Thank you and God Bless

Terri

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