Friday, February 3, 2012
You said this to one of the members in my support group, "They [vasculitides] are autoimmune in nature and potentially life threatening and can negatively affect a patient's quality of life. The treatments involve a combination of high-dose prednisone, disease modifying medications, chemotherapy,... and biological drugs. Please know that I do understand that UV can be very uncomfortable...to say the very least. I have psoriasis..so I empathize."
Do you think because the word "urticaria" is in UV that we just suffer from occasional hives? UV is a systemic autoimmune disease that most of us have been dealing with for 10-30 years. We take high-dose prednisone, DMARD's, chemo, and biologicals just like you do. We suffer in pain with severe fatigue just like almost every other autoimmune disease. Some of us develop new autoimmune diseases along the way, just like you do. Some of us develop necrotic sores on our legs, while some of us are luckier and the vasculitis just leaves bruises where the veins burst or leaked blood. Some of us have developed pulmonary fibrosis, paralyzed vocal cords, digestive issues similar to Crohn's, the list goes on - and it is all secondary to urticarial vasculitis. This isn't some minor skin inconvenience of hives as a reaction to some other illness or an allergy. This is an autoimmune disease classified as vasculitis by a biopsy that requires treatment by a rheumatologist, NOT a dermatologist as you suggested.
I used to raise money for the VF, hand out brochures and try to raise awareness about vasculitis. I was mentioned in one of your mail-outs as the contact for my area. I was once asked to join one of your boards to help raise awareness. (I thought you were asking me to raise awareness about UV, but now I am really confused!) My father has been wearing one of your bracelets in my honor everyday since I was diagnosed. It is hard enough trying to find a reason to get out of bed every day and deal with the crappy health card I've been dealt, but then to find out after all of these years that the organization that is supposed to fight for me still won't even acknowledge me as one of their own... well, that is the last straw for me! I think I will tell my father to take off that bracelet today.
Thursday, April 1, 2010
My rooster is gone and I am completely heart broken. I don't think I will ever be the same without him.
It turns out he had a large tumor in his throat which was preventing him from eating. I was mixing a high calorie wet food with water so he could drink his food during his last few days but he was still choking on it. Sunday morning I woke up to the sound of him choking and gagging on mucus and he was foaming at the mouth. His tumor was compressing his airway. I rushed him to the emergency vet and they put him in an oxygen tank for a few hours but he was not improving. There isn't much success in removing an esophageal tumor in cats and so I had to make the hardest decision of my life to let him go.
My surviving cat, Fay, is very distraught. She is continuously wandering around the house crying and looking everywhere for him. It is very upsetting because I can't explain it to her and it makes my heart hurt even more to know how much she misses him too.
I was there for his birth. He was the very last kitten born and was coming out feet first. He got stuck with just his legs out and his sac broke. I was afraid he would suffocate so I decided to pull him out of the mother by his legs and she was not happy about that. She clawed at my arms while I pulled him out as gently as I could. We were instantly bonded by his traumatic birth. After he was weened, he would sleep on my head and lick my lips if I kissed his nose. He was the smallest kitten in the bunch and I always wanted a small cat so I decided to keep him. Little did I know he would turn into a giant 21 pound cat :)
Rooster has been my loyal companion for almost 13 years now and he has helped me survive some of the hardest and darkest times of my life. He has moved across the country and back again with me, and has seen me grow from a girl into a woman. I was holding him for his very first breath and I was holding him for his very last. In the end he was calm and purring when he passed. I held his body and kissed his nose one last time. Rest in peace my sweet Rooster, and me in pieces. 1997-2010
Rooster & Romeo 1997
Saturday, March 27, 2010
But the worst part of this week is that my cat, Rooster, is very sick. He has also been having a hard time eating. It turns out his tonsils are so swollen that food can't get down his throat and he almost died Thursday night choking on food and mucus. I rushed him to the emergency vet and he quit breathing in the car on the way there. Thankfully they managed to clear his airway and get him back and he seems fine except when he tries to eat. I have to liquify his food and he still has trouble getting it down. He is the closest thing I have to a child and I would be devastated if anything happened to him.
He is 12-years-old and I actually delivered him when he was born. When I am at my lowest points in life, he is my shining light. This might sound silly to some of you but I am a gal who is not married and lives alone and this cat has more personality than a lot of people I've met in my life. Outside of my family, he is the longest relationship I've ever had.
The vet told me it is possible he has an autoimmune disease and I just started laughing. If my cat ends up with autoimmune issues like me then there really is no justice in this world. They took a biopsy of his tonsils because it is also possible he has lymphoma. Luckily, all of his blood work was normal and he does not have FIV or leukemia. Best case scenario is that he has feline herpes virus which is still really horrible.
Anyway, I just wanted to give an update. I will resume my curvy reviews and reading of your wonderful blogs as soon as my Rooster is back up to speed. I will take on all the sickness this world wants to throw at me as long as my kitty is happy and healthy. Please send good thoughts his way!
Tuesday, March 16, 2010
I'm back from my blogging respite which was really just a week of exhaustion. You know I'm exhausted when I don't even check the Anthropologie website on a daily basis! So I apologize for the lack of reviews last week and for falling off the face of the internet but this is what happens from time to time when you have exhausting autoimmune illnesses. Well for me at least, I don't know how Chloe does it!
First is an outfit of the day (not today) that I wore to a birthday party weekend before last. I don't get to do many of these OOTD posts so I thought I would sneak it in here. It is all from Anthro except for my jewelry which is an antique locket from the 1930's and my sexy medical ID bracelet.
Dress - Dandelion Wish Dress (style #933240)
Shirt - Paramount Scoopneck (now called Pure & Good Basic Scoopneck) (style #953623)
Tights - Opaque Tights by Hue (style #953451)
Boots - Winding Ruffle Boots (style # )
And now for Another Curvy Girl Review:
You guys, I literally got to Anthro 30 minutes before they closed so please excuse the rush job on the pictures. I also didn't realize there was a big smear of yuck across the bottom of the mirror until I saw it while resizing the pictures. Let the games begin!
Wednesday, March 3, 2010
I defy you not to smile when viewing this picture of my friend, Nicole, and her daughter, Colette, dressed up in French costumes. Just in case you were having a bad day and needed a little pick-me-up, I present this to you because I think this is officially the best picture ever!
Am I just old or am I missing something? Jeffrey Campbell shoes confuse me!
Even if I could wear some platforms like this, I don't understand the choice to have the toe and heel extend beyond the base of the platform. To me it is like having "stripper toe" in the front (thankfully without the toes actually hanging over and gripping the shoe) and the back seems like it would just hurt your heel. Maybe I am just too sensible...
Monday, March 1, 2010
That's all for now. I'm excited to see what goes on sale tomorrow even though I can't buy anything. I hope everyone has a wonderful week!