An Open Letter to The Vasculitis Foundation

I am completely baffled by the VF's stance on urticarial vasculitis. You treat us like second class citizens and continue to tell us that we do not belong. Do you know more than our plethora of doctors, biopsies, and lab tests or did you just read 1 or 2 articles of the very limited amount of information online about this very rare form of vasculitis?

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.

http://en.wikipedia.org/wiki/Urticarial_vasculitis

Worst Day

Rooster & Fay Wray 2009

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 & Fay Wray 2010

Rooster & Romeo 1997

Worst Week

Sorry I've been MIA again. It has been a rough week. I've been sick with some new internal thing where my body has decided that food is the enemy and as usual the doctors don't know what's wrong with me. I will be going in for an upper GI exam and an abdominal ultrasound next week.

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!

OOTD & Another Curvy Girl Review

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!

This is the gorgeous Particle Daisy Dress by Leifsdottir ($328 style #030027) in a size 12, because it does not come in a size bigger than 12. Now ladies, just because this dress is too small for me, please do not let these pictures discourage you! If you have a bucket of money to spend on a dress and are at least 5'7" with breasts smaller than 38D, THIS IS THE DRESS FOR YOU! It is soooooo beautiful and feels exquisite on! Unfortunately, I do not have a bucket of money, I am 5'5", my boobs made the faux-wrap style create a peak-a-boo slit in the bust, and I just do not do this dress justice. Everyone should at least try it on though just to experience how wonderful it is. That third picture is of the little metal balls which hang on the end of the attached belt ties. The SA in the dressing room said that not many people having even tried on this dress which is a damn shame because it is divine! Moving on...

The Optical Illusion Dress ($188 style #033042) would be a cute party dress had it been able to zip up past the bottom of my bra. Therefore, you only get 1 picture to imagine what it could have looked like. Optical illusion indeed! This one probably has too much cleavage than some will like, but I personally don't mind it because it tends to distract from the belly. At least that's what I tell myself... Oh yeah, the biggest size my store had to try on was a 12.

Here we have the latest in maternity wear. Just kidding! Seriously, don't get on me for the self-deprecation, it is just part of my shtick! This is the Lisbet Blouse ($128 style #013076) which I think might only look good on an extremely thin woman with very small breasts who wouldn't get this tent effect, but even then I'm skeptical.

Maybe I just don't know how to wear these types of shirts but this one (I can't find it on the website) wasn't doing my figure any favors! I grabbed a sash off of a dress to see if it made things any better, and there was a slight improvement but I think I still look like a potato. This color green is fantastic though!

The Corsage Twirl Dress by Deletta ($138 style #033043) definitely runs big. The first pictures are the XL and the second set is the L. However, once in the correct size, I realized that this dress accentuated ALL of my curves and not in a good way. My boobs look HUGE and that is not a look I'm going for. Plus there are lumps and rolls in other places which I like to hide as a rule. I'm not sure if it is the color or the material or both but this is not the dress for me. I actually think it looks better on me when it is too big.

The great thing about this blog is that I really get to see what types of styles and fabrics work for my figure and what types don't. Some of you might think I'm overly critical but I'm actually not sitting here hating my body. I actually just lost 30 pounds that I had gained from steroids and I'm feeling wonderful! I know my figure can look good and I know it can look better depending on the outfit! I'm just not willing to spend big bucks on something that doesn't make me feel pretty :)

I was really looking forward to this top, Assemblage Tank by C. Keer ($58 style #913906). You can't see its lovely details in these pictures, but it has some colored fabric pieces peeking out at the bust line and sewn into the sweater knit collar. The only problem was the giant armholes. This seems to be a recurring theme. I may overlook the armholes though because I live in Texas and that sweater knit collar would be really hot in the summertime and giant armholes might be a blessing in disguise. We are talking every day over 100 degrees here, people!

Lastly is this strange bird of a dress, Caballo Falls Dress by Lil ($168 style #033013). I had this on my wishlist after seeing it online because I liked the colors and thought it would do good for my figure, but unfortunately this dress has issues! First of all it would not zip up over my chest and this was a size 14!! Secondly, I could not get that dang bow to look pretty no matter how many times I tried to tie it. Go look at the shot on the website and then look at my picture again. Mine looks like a wet noodle! Too bad because I think this would have been very flattering on me. If I lost a few inches around my ribs (what I lovingly refer to as my "back boobs") and got this dress on sale I guess I would wear it with a different belt. Woe is me...

Enchanté!

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!

Who decided this was a good idea??

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...

Another Curvy Girl Review

Only a few reviews today as the newer dresses had either not arrived yet or were not available in my size. It was also a solid color day which sort of describes how I was feeling physically yesterday when I tried these on. Either way, a trip to Anthropologie always makes me feel better even if I leave without a purchase!

This is the beautiful Cherie Dress ($188 style #033007) that looks so wonderful on the hanger but not so wonderful on a body. I tried on the 14 and the zipper stopped dead in its tracks right at my bra, so here I am trying to fake it for the review but really it is not zipped up all the way. However, I could already tell that the elastic middle would cause problems as other reviewers have noted because it wants to bunch up instead of staying flat. I'll never know if the wide set straps were a problem for me or not but many others seem to think they are. Adieu sweet Cherie dress, adieu!

Here I am wearing the Cosgrove Dress ($128 style #933180) in a size large, although I think an XL was in order. This dress just fit very strangely. The waist is in an odd location but perhaps just needed a belt. This is definitely a pass for me.

UPDATE: I remembered that Roxy reviewed this dress and it seems to have worked on her when she sized down to a small. You can see it on her here.

Here we have a comparison of the Curvy Shift ($118 style #033058) in an XL in the first picture and a L in the second picture. It is not often that I try on a dress at Anthropologie and feel like I am swimming in it (especially in the bust) but this was one of those dresses! I have no idea how someone with a small chest would wear this dress at all because even though the large fit, the top still had some gaping in the middle. Overall, this dress is soft and stretchy but it did not provide a flattering silhouette and for $118 there are many, many prettier dresses to choose from! However, if I were in need of a comfortable/professional looking ensemble (which I am not), I could pair it with a sweater like below:

I could not locate this sweater ($118) on the website so you get a blurry tag photo below. UPDATE: This is the Honey From The Bees Blazer ($118 style #013170) - thanks Kathleen!! It also comes in a black & white version and I think it is adorable! If anyone knows the name of it please let me know. I tried on the medium because it was the biggest size they had but if I could find it in a large on sale I would definitely buy this. I'm a sucker for a blazer style sweater and this one has some really cute details in the pockets, shoulders, and single large button.


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!