London College of Fashion

Guys, I got in to my top choice school in London! I will be moving in August and getting my MA in Fashion Design Management at London College of Fashion. Obviously a lot has been going on between school, my surgery and my diagnoses--I will update as soon as possible on all fronts. I'm just taking a second to bask in this moment. Fuck it, I'm so proud of myself. Not just for getting into school (because that was a huge feat for me anyway) but just getting to this point.

Just goes to show if you listen to "Flawless" enough by Beyonce, all your dreams can come true.

I'm such a cornball. WHATEVER. 

Issues With My Tissues and Getting Into My Masters Program

Hi all.

It's been a wild week. First off (and the best news), I can finally say I have officially gotten in (so far) to 1/2 universities I applied to. I may have a chance of even getting a full ride scholarship. I'm still waiting to hear back from my top choice.

Just FYI to the other chronic pain people, I had listed myself as disabled for this school. You should know that during my interview not one question was brought up asking me about my condition. I love that. With the disability support, I will get the accommodations I need in case I have a flare and can't make to class, have to get an extension for a test or paper. I don't know how I'll need to be honest but it's just a security blanket at this point. It is immensely comforting to know that it's there. The UK seems to be much more sympathetic to disability.

I WILL OFFICIALLY BE MOVING TO LONDON IN AUGUST. Can you believe it? Can you fucking believe it? After all this time, everything that's happened has finally spiral into good news and something productive.

For the very few I may come across who are considered disabled and plan on studying and living abroad, I will continue to post tips/ideas/suggestions for moving and settling into a new, international city as I figure them out.

The next day, I finally had my first appointment with the top geneticist in the country, Dr. Francomano at GBMC. She was amazing, it was amazing. I was there for HOURS and finally got my official diagnosis: Hypermobile Type Ehlers-Danlos Syndrome (a hereditary connective tissue disorder) with strong suspicion of Mast Cell Activation Disorder. To be honest, it was a little overwhelming and I'm currently not in the condition to go into great detail right now.

There are a lot of explanations I need to provide and tests I will be doing after my breast reduction surgery on February 19th. I will make separate posts about each/all of these things to explain further because, from the people I've told so far, there are A LOT of questions. If anyone reading as any questions at this point, feel from to email me from the "contact" section or post a comment and I will be sure to get back in touch with you.

Why Small Boobs Are Better--At Least for CMPS | Planning for Breast Reduction

So, part of the reason I've been so busy lately is because, after several doctors recommending it, I have been researching breast reduction surgery. In December I decided to get an eval to see and understand the timeline. The doctor agreed it would really benefit me and within a month, my insurance claim was accepted. Because of other potential variables which may come into play later, I scheduled my surgery for February 19th. Right now, I am a 34/36F looking to be a small C. While I am SO excited to be part of the IBTC, I am mildly terrified to get this surgery.

Yes,  3 years ago (pre-dx), I had 3 surgeries on my nose and while it was mostly medical, it went seamlessly. I would've done it again in a heartbeat. But now, with my pain, I have no idea what to expect after surgery. I've been asking some support groups and researching online. I feel like there's a small potential that my body will go completely AWOL and it'll ruin all of my progress. Best case scenario, it goes well with a little added pain. Because of my reactions to pain killers, I decided I won't be taking anything but extra strength Tylenol. 

At my pre-op appointment, however, I will be asking my doctor about a pain pump post op. I've learned from several people with CMP that they used a pain pump and their surgery went pretty seamlessly with just tylenol. A pain pump has local anesthetic which slowly pumps out through a very small catheter placed in the incision that can be kept in the wound site for 2-5 days. It also supposedly causes less nausea (which is what most of my problem was the first time around with my nose.) My surgery will be near Philadelphia, so we will be staying in a hotel for 3 days. I have been furiously planning for this. There aren't a TON of things on the internet and I love to over-plan. So consequently, a multi-tabed excel sheet has been made. 

Here is a handout author/MD Devin Starlanyl wrote that I am planning on giving my doctor. 

Large breasted women out there who are wondering about this---here are a few reasons:

-alleviate back/neck/shoulder pain

-help posture

-exercise easier/help lose weight 

(These things are all perpetuating factors to my condition.)

-reduce rashes under breasts 

-bras fit more comfortably 

Although, in some cases, some women are not able to breast feed and sometimes lose sensation in their breasts. All things I'm willing to forgo to have this surgery. (But I would be pretty happy if neither happened.)  I've seen pictures of some boobs immediately post op and they are terrifying (I've been referring to them to my parents as "Frankenstein tits".) but I decided I just won't look at them. I feel like if I saw them I'd cry, vom or both. Mom will be in charge.

Nearly every single person I've talked to has said it has greatly helped them. A lot of people even said they could feel an instantaneous difference. This excites me. 

At this point, I'm just honestly willing to do whatever it takes to feel better. But I am also excited to shop for new bras. :)

No One Gets Flowers For Chronic Pain

This was a thought that just occurred to me a few days ago--no one gets flowers for chronic pain. People get flowers when they have have a heart attack, break a leg, surgery, cancer--hospitalized for any reason overnight. Not that I'm trying to compare what I'm going through with cancer. At this point, I don't necessarily see cancer as a death wish now, like ALS but it is comparable in a lot of ways--effects everything you do and you're constantly surrounded by doctors, dealing with a lot of emotional and clearly physical pain. (Crazies of the internet--I am not saying you shouldn't be sad about cancer and that some people obviously die from it.)

I'm sure most people just see this as my daily life now and if I'm not outwardly crying and have a smile on my face (which is the norm), everyone just assumes I'm okay. Like I've said a million times before, even when I describe in detail and unless you're around me 24/7 (Sorry Mom and Dad!), you just can't know. Or you just don't want and I totally understand why. It's a lot of sad shit sometimes and I wouldn't judge you for not wanting to invest your time involving yourself in it going into detail. 

Side note: this isn't a pity post--I wouldn't want flowers because you feel sorry for me. I would want flowers as "I respect what you're going through and I think you're handling it well. Here's something beautiful to look at while you continue to deal with it." flowers. 

But then again, I am the kind of person who would send someone flowers just for dealing with life anyway…everyone should be respected and appreciated for dealing with whatever shit they're dealing with anyway. Let's face it, pain or not, there are a lot of people out there dealing with a lot stuff. 

Then again, I've been really #blessed by having really considerate parents. These were "Happy Ides of March" flowers I received at work from my dad. I really am lucky to have them. 

Catch Up Post

Hi guys! Sorry I've been MIA for a little. A lot of things going on. Just wanted to check in and post about some of the things I've been using lately that have been helping. The past or month or two have not been the greatest (pain-wise) but I'm convinced things will start to get a little better soon. Myofascial Pain Syndrome is a high maintenance syndrome--I need to do a lot to keep up and feel as normal as possible. Dealing with myofascial pain, to me, is essentially figuring out all my perpetuating factors and figuring out how to correct them (i.e., posture, headaches, balance issues, etc.)

1. Sleep (at least 8 hours, or I know I'll feel like shit. Sorry morning people, I won't be around.)


2. Supplements- I am currently taking B-12 and D for those vitamin deficiencies as well as turmeric, Biotin, Align (probiotic), a multivitamin and a few other random ones. I've really tweaked it down and this is what's working for me. Although the grass is always greener, so I'm constantly looking for new and better things.

3. Exercise and Wellness- This is been a long process for me. The last few months I was really starting to think I was plateauing. I was discharged from PT but it was hard to get to the gym to do my exercises. Swimming feels great but immediately getting out of the pool, freezes my muscles and puts me back where I started. I also feel it's very important to have a professional watching you to make sure you don't re-injure yourself, which is very easy to do.

LUCKILY, I have a found a trainer I just started with last week who specifically deals with people with chronic pain. I think it's going to go great but it'll take some time to tell. Ultimately, I need to get myself back into shape and straighten all my muscles that have atrophied and this guy will most likely be the best way to make that happen.

Once or twice a month, I am also going to a chiropractor to get realigned and a massage therapist who works at calming down my nervous system. (Fun fact: when you become a chronic pain sufferer, you become conditioned to associate touch negatively from constant poking and prodding.) Massages are slowly starting to feel good and become less painful.

I am also continuing to get injections once or twice a month depending on the severity of the trigger points. My last visit had 8 people total in the room watching me. I am really developing a posse. And I also made them take a picture because I knew no one would believe me. I spent the next hour or so answering questions and lecturing a bunch of 2nd years about MPS and hypermobility.  I kind of love explaining medical related things to med students as the girl in fashion.  Suck it, med school.

I'm also talking to my therapist when I need her. I think I've been able to handle my stress more lately. 

4. Knowing Your Limits- This seems like it should be pretty simple but is still hard for me to this god damn day. Take breaks before you get pain--whether you're cooking, shopping, whatever. Bring snacks if you get hypoglycemic. Don't be an idiot.

5. Potential Breast Reduction Surgery- Met with a doctor a few weeks ago after both my doctors suggested breast reduction surgery. My posture is bad and I have a lot of trigger points around my bra areas. I don't think it wouldn't..not help at this point, although it will be miserable to do without pain meds. Sad face. But assuming it will be covered by insurance,  I am very excited at the thought of having normal sized boobs.

6. New and Old Products I am continuing to use for pain-
(Where to buy old products in previous posts.  I will link new products.)

China Gel

Kinesio Tape- Like I said earlier, posture is a super important perpetuating factor in dealing with trigger points. Until I can get my breast reduction surgery (and after), I will need to strengthen my muscles to better my posture. You can wear this stuff for a few days and it's pretty water proof, so I even wear it in the shower. I've had PTs put it on me before but I actually prefer the way I do it. You can watch Youtube tutorials but I know what I needed.

RAGE Muscle Therapy Curve Cane- This thing kinda looks like some wild sex toy,  but it's just a theracane for athletes. I like it because I hate touching my trigger points. A lot of them are in my neck and shoulders and this crazy thing actually helps sometimes.

Instant Cooling Towel- So guess what store indadvertedly has the best trigger point stuff? Dick's Sporting Goods. Their Sports Recovery section is just ridiculously awesome. You can wet this towel and it'll immediately stay cool for like 2 hours. Cool, right? Good for long car rides, impromptu pain situations. Me likey.

Aches and Pains Shower Gel- This is made with eucalyptus and menthol. Feels good in the shower and lets me do a little more than I usually could post shower. I put it in straight when I get in and let it sit until I'm done to set in.

Emergen-C- This stuff tastes like nasty crap, but I chug it post injections and it seems to help. Has electrolytes, etc. I felt like I recovered much faster than usual.

Ergonomic Computer Stand- Like I said, posture is key. I lay down a lot when I'm on the computer and I'm slowly transitioning over to sitting with this thing and I think it helps.

Amazing Grass Superfood Powder- It's hard to eat healthy when you feel like shit. This green smoothie supplement actually tastes pretty good. I mix it in my nutribullet with some OJ, water and 3/4 of a banana and try to drink one every day.

Paleo blueberry muffin and green smoothie. Who am I?

TENS Unit

Nike Roshe Runs- I have flat feet and these are supremely comfy.

Resistance Bands and Stretch Out Hamstring Strap

I'm gonna have a whole closet of shit soon.  It's nap time, bai.