Girls with Guts: Meet Alyssa Zeldenrust

I was one of a few awesome ladies who helped out with a GWG promo. To see the others, check out their YouTube channel: http://www.youtube.com/user/IBDGirlsWithGuts/videos?flow=grid&view=0

You’ll be glad you did.

If you are intrigued by the bracelet I mentioned, visit the Girls with Guts Etsy shop: http://www.etsy.com/shop/IBDGirls

2013 CCFA Illinois Educational Symposium Promo

This year I decided to share my enthusiasm in the hope that some of you will be able to enjoy this great conference. The video is nothing fancy, but I like simply talking to you.

The 2013 symposium will be held on April 20 at the Holiday Inn Skokie Banquet and Conference Center.

For more information about the event:

http://online.ccfa.org/site/PageNavigator/2013_AnnualPatientConference_Welcomepage.html

CCFA Illinois Carol Fisher Chapter: Tel: 847-827-0404, E-mail: illinois@ccfa.org, Web: http://www.ccfa.org/chapters/illinois/

Friendship, Fashion, & Fun Finds

This post is reposted from my dear friend Amanda‘s blog. Enjoy!

People love and appreciate others, 

not just for who they are, 

but for how they make us feel

..Irwin Freedman..

 

Sometimes we find what we’re most looking for when we least expect it. Cliche? I know. But true? Absolutely. This afternoon, I found myself driving south a little ways to visit a new friend. Well, an old friend in truth, we’ve video-chatted and texted and instant messaged for so long I feel like I know her whole life story, but to me, I was still a little nervous.

What would I find when I met her at the door? Would it be awkward? What would we talk about? I brought a whole bag full of DVD’s (none of which ever came out of their cases) and my computer, and nail polish and an assortment of other things too as afternoon activities, but the sun has long since set and we’ve found plenty of ways to entertain ourselves and each other.

I started by explaining why I was a little later than I had planned (blame Victoria Secret), and we began talking about fabrics and sensitivities and here we are, four hours later, and I’ve made four online purchases and I think her nearly as many.

So, I’ve talked about some of the things wrong with my insides – but I’ve never quite discussed how this translates to my outsides. I have extreme visceral hypersensitivity – my nerves over-fire almost around the clock, meaning that any normal sensation for one person my body interprets as “wrong” and has a reaction to it. Well, my hypersensitivity extends outwards too. I’ve always been very susceptible to temperature changes (I struggle immensely in the cold… it actually physically hurts my skin sometimes), and more recently touch (gentle, and slowly, please). This translates to fabrics – sheets and towels and clothes and underwear.

For at least eight months now, I’ve only worn lace waisted underwear. My favorites stopped being sold at the end of summer, and since have subsided in what I had collected (part of the PINK collection from Victoria Secret) and more recently, I’ve been buying the lacie (which is a little lower cut than I’d like, but it helps). Today, my friend suggested Soma’s Lace Hiphugger or Laceable Thong. (PS – they’re having a panty raid and its currently 7 pairs for $35).

My second issue is pants. If you know me, you know that I don’t believe in pants. Like, at all. I’ve literally worn leggings or dresses for 16 months straight. I have one pair of stretchy jeans, and that’s all. Part of this is because my size changes so often (meds, diet, degree of illness) and part of it is because with abdominal pain, the last thing in the world I want or can even handle is something cutting into my waist.

I’ve been reduced to tears more times than I can count because I dont have anything that fits or anything thats comfortable or anything that looks presentable to leave my house in. I’m pretty sure that all just changed.

When I told Alyssa this she was like LET ME SHOW YOU MY TRICK PANTS. And skeptically, I followed her to her closet.

UM. O.M.G.

How did I not know about all of the things?!

Ironically, we’re about the same size right now, so I was able to try on many different varieties of pants that look like pants but dont have texture problems or weight restrictions or waistband issues! Pictured above are some of my favorites.

Many of these are found at multiple stores or on multiple websites, but here are links so you can at least check out colors/styles,etc:

Daisy Fuentes Boot Cut Ponte Pants  (yes, i ordered them in black and in grey)

Mudd 5 Pocket Color Skinny Jeggings (purchased in grey)

Rewind Ponte Skinny Pants (Um, they’re NORTHWESTERN Purple)

Jag Jeans Pull-On Boot Cut

Jag Jeans Pull-On Narrow Boot Cut

Alyssa owns JOLT jeans – in both bootcut and skinny jean, which I am obsessed with and threatening to steal, however, we cannot find them available anywhere online and are thus concerned that they have stopped production on these (WORST THING EVER).

We also highly recommend:

Gap Body – Pure Body Tee Shirts (long sleeve or short)

Victoria Secret Raglan V-Neck (long sleeve or short)

We just thought we would share our finds with you, incase you have tummy troubles or an ostomy or just like comfy pants/underwear.

Keywords for searching for related items would include:

Pull-On

Foldover

Ribbed Waist

Lace Waist

Magic Waist

Please share any successes or other products you love, we’d be happy to give them a try!

Pants and underwear seem like small feats, but when you feel better about what you’re wearing and leaving your house, the world seems a little less terrifying outside.

xo,

A&A

Storytime: Hospital Update

Friends, as some of you may be aware, I have been out of sorts for several months now. Respiratory issues just would not let up. So I ended up in the hospital for a few days so various doctors can figure out what’s going on. People get nervous when I start fainting too much, especially when a few of them started resembling seizures. I’m not sure when I will get out, but I can see and type well enough, albeit temporarily, to update those of you who might be curious.

Mold exposure in my old apartment started this mess. I’ve had persistent bronchitis and a flu on top of my severe mold allergy. After seeing lots of doctors, some ER visits, and a previous hospital stay, hopefully this will be the turning point. 

Check out how I spend some down time during a hospital stay. Cartoons are my favorite. You can pick them up anywhere, doze off, listen to doctors, etc., and they’re not confusing. I confess my brainpower is not at maximum strength when I’m in medical settings.

I eat lots of Froot Loops, because hospital food kinda sucks sometimes. This cereal is brightly colored, sugary cardboard, but it works. In the scene above, Bugs Bunny has just been seduced by a witch who turned herself into the lovely golden rabbit you see next to him. He turns to the audience and says “Yeah, I know. But they’re really all witches inside, aren’t they?” Still shaking my head.

Let’s see, what else have I been up to…

I accidentally hit a nurse when she injected air into my IV. I have little veins, and I flail when jolts of pain go through my arm.

During this stay I’ve mostly been too dizzy, occupied with testing, or too worn out to function much. I have been lucky enough to hear from a few sweet friends, and I am still smiling after a delightful visit from a fellow medical challenge. She tried to make balloon animals out of medical gloves, so obviously now I have a new talent to learn. Also, my IV pole has been officially accessorized.

 

I love you all. Sorry for being mostly off the grid. My thoughts constantly stray to correspondence, schoolwork, and advocacy efforts, but then I remember than I should probably wait until I’m in better condition. Tonight is a good night for staying hydrated, watching cartoons, and prayer. I hope for better days ahead for all of us.

Resources: Holiday Tips

Here are a few websites that aim to help people with various illnesses enjoy the holiday season while minimizing physical discomfort and social awkwardness. Sadly, my own holiday guide does not exist yet, but I plan to write one or make more videos in the future. Holidays can be tough if you’re not feeling well or if your illness is holding you back. When I say tough, I mean panic-inducing madness. This is an important topic for me, because I want you all to enjoy life despite your health issues, and I know how much it hurts to feel like you’re missing out.

• Life with Disabilities: WEGO Day 19: Prepping for the Holidays with Disabilities
• About.com, IBD section: 10 Tips for the Holiday Season
• Salix Pharmaceuticals: Sailing Through the Holidays With Inflammatory Bowel Disease
• Life & IBD: Holidays and Travel
• Fighting Fatigue: How to Survive the Holidays with Chronic Illness
• WebMD: Chronic Illness and the Holidays
• American Holistic Medical Association: Chronic Illness and the Holidays- Fielding the inevitable questions
• Keeping Things Inside is Bad for My Health: How to Get Through the Holiday Blues with IBD

As always, I’d be delighted to hear your favorite holiday tips or include a link to your website if you have additions.

In case you missed it, I made a video about holiday food.

Holiday Food

Not up to writing today, so here’s a video for those of you struggling with dietary restrictions, especially during a severe IBD flare.

Guest Post: A Young Person’s Guide to Living with Crohn’s Disease

Today I have a few tips for newbies, courtesy of a guest nutritionist. Bianca Ridley works for Nutricia, a company that specializes in the delivery of advanced medical nutrition for the very young, the old and the sick. As well as being the largest specialist nutrition company in Europe, Nutricia is the market leader in the UK. They supply high quality feeds, systems and support services to patients and health care professionals.