Why Telling Someone Who's Sick "It's like you're on vacation." Is Never Okay

Ah, the naïveté of the "normal".

First, let me just say that referring to my (or anyone else's for that matter) medical leave as "getting a break" or "being on vacation" is straight up dumb. To the outsider, I'm sure it seems like I'm probably doing nothing all the time, but it is quite the contrary.

I would love to be on vacation. But guess what? Even when I would get a vacation, I don't think I would ever actually be on one, if that makes sense. I would love to temporarily (or permanently, obvs) remove myself from my pain and perpetuating factors to actually relax, enjoy myself and not feel uncomfortable. That would be awesome. When I will fly to London, I will now have a wheelchair, special accommodations and seating, extra drugs, carry ons, etc. Planning this flight alone has been exhausting/pain in the ass.

Like today, for example, my pain and GI issues were so bad that I have been nauseous, dizzy and spasming all day. I heard the weather was nice. I wouldn't know since I didn't get to leave the house. And more often than not, this happens pretty frequently. And, like I've said many times before, I have pretty much no medication to help with my pain.

"Normal" people---when you have the worst kind of flu for 2 weeks, do you truly feel like you got a break or had a vacation? I would imagine between the fatigue, muscle aches, nausea/vomiting, fevers, etc. that you would probably say no. Keep that in mind when you're talking to someone with chronic pain.

To be honest, through all the hard work I put in before having to move home--between working, school, internships, etc. this is single-handedly the most exhausting full time job I've ever had. Even things that used to be enjoyable (ie. going out with friends, actual vacations, dating) are just stressful and generally miserable. Most of the time, physically, I am miserable.

Rant over.

A Formal Goodbye to All the Heels I'll Never Wear

It's important to know that as a former fashion student, future fashion student and all-around passionate shopper, shoes are everything to me. I'm 5'10" but I could strut with the best of them in college. I wore the highest needle point stilettos I could get my hands on. I had strong, deep physical and emotional reactions to seeing shoes I loved. I think maybe in another life I would've been a shoe designer. I prided myself on always having wonderful heels. I never even owned non-athletic sneakers until I was on disability.

Guys, this is crushing my soul. And as much as I tried to make it work with me and heels, as many outfits as I would love to plan on wearing in London, every time I put on a heel, it just kills me. Pain shoots up my body. I can't move for the rest of the day. I can barely even walk in heels now. I am being semi felicitous and purposefully overdramatic but it is one of the little things I have to adjust to.   Sadly I still want to buy them all the time but I know practically they are of no used to me anymore. Guess it's just flats, boots and sandals for me now.

:(. 

Here's a nice little list of all the dream heels I used to tell myself when I had the salary I would buy eventually. 

The French Lover Suede Sandal by Aquazzura

So Kate Blush #2 by Christian Louboutin 

Alaia

Givenchy

Nicholas Kirkwood for Erdem

3.1 Phillip Lim

Dolce & Gabbana

Rodarte

Rem Koolhaus

Roland Mouret

Celine

Jimmy Choo

Sergio Rossi

Giuseppe Zanotti

Giuseppe Zanotti

Goodbye heels! I feel like I miss you and I don't even know you--the nights we could've had, the outfits you would've made me like an HBIC in, the blisters I could've hated you for, the men we would've towered over. It would've been real--real fun. Maybe someday we can be together again. 

I was going to make this into a love sonnet, but not even I have time for that.

PSA To All Friends

Alright, people. This is another one that desperately needs to be written and understood.  I'm very sensitive to my friendships (or at this point, lack thereof, in this case) but have generally taken a new approach. To me, I'm not sure if chronic pain is isolating in and of itself, it's often the lack of understanding that (at least for me) makes me feel alone sometimes. Sometimes the lack of empathy is more unbearable than the pain itself, like you're living in a state that is so entirely foreign and inconceivable to most people--and that is what makes it alienating.

Good portions of my day are usually spent being guilt tripped by friends that I haven't seen them, haven't FaceTime-d them, never call, never text, etc. Before I always felt the need to apologize and explain myself but most of the time now, I am so sick of constantly having to explain myself. People don't realize the fear--the fear of being judged, the fear of not being understood, the fear of feeling vulnerable. That fear strengthened my relationships with very close friends and loosened my ties with acquaintances.

In my worst pain, all I wanted was to be distracted. I wasn't capable mentally and physically of contributing to conversations and constantly explaining to friends and family what my pain is like, the current updates on my health and hearing the (mostly) senseless feedback was unbearable. (Keep in mind, for most of my grueling experience with pain, I had gained weight that I am slowly losing and compared to what I used to look like, generally feel like I let myself go--my hair and make up is never done. I dress for comfort now mostly.) Sometimes I avoided people entirely because as nice as it is sometimes to be asked how you're doing, it can also be a pain in the ass if you're being asked 15x in a row. I already do this with doctors almost every day.

Some people who will remain nameless have taken it personally that I haven't tried to "rekindle" relationships with them since I've been home. The best response I have to this is that it is nothing personal. I am generally so overwhelmed by all the things I have to do and am so exhausted that old friends unfortunately get passed to the wayside so I can maintain the friendships for the friends who aren't just "checking in" but calling me every day. To me, the people who loved me at my darkest, are the ones who I prioritize.

Here are several things that need to be known:

• In general, I would rather hear about you. Your day, your funny experiences, etc. than talking about my health problems. I generally feel uncomfortable having to explain myself and for some people, it's just too damn sad, so at the risk of making it uncomfortable, let's keep it about you. Or just send me funny things. I always appreciate it. No one understands how god damn boring this gets sometimes. I generally try to "shield" people from how bad my pain really is.
  
• If I cancel plans last minute, it is never because I don't feel like coming. I am in my house, doctor's offices or volunteering for a good percent of my day, so if I can handle it, I always want to go out. Some people are really good about this and some obviously aren't. I've just decided I can't feel bad about making decisions that may affect other people. I'm responsible for myself and need to take accountability for my actions. No one understands my body like I do, so I have to make judgement calls...whether it upsets other people or not. 
  
• Sometimes it's hard to explain this but I try to explain to people that my days sometimes feel like a shitty, charged iPhone. I have limits. There is only so much I can do every before my battery dies and everything takes some battery life. Especially those moments when you think you have 10% left and all of sudden you're at 2%. Sometimes this becomes an anxious social situation.  Situations where I am out with friends, I haven't drove--I have no control. I don't live in a city and if I need to go home but can't, I panic. I avoid these situations as much as possible. 
• Having a "good day" doesn't mean that I'm better, just means that I am having a good day.
• I've cut out a lot of friends and family that caused me grief and frustration for the better. It wasn't easy cutting ties but I do not have the emotional and physical energy to deal with drama, shit talking, etc. And as always, if anyone has any discrepancies, tell me to my face. Trust me, my skin is thick and I can handle it. I would always rather find out from the source than backhandedly. PS. Tell me if you're uncomfortable with my situation. These are things I need to know about. I have no patience with toxic behavior and am shameless to tell you so if it gets that point. 
  
  
  
  
  
  
• Even if I'm smiling and looking like I'm having a great time, there's a good chance I'm screaming internally. If I need to leave right at the end of a dinner or cut things off early, again, nothing to do with you. 
  
• Clubbing is never an option anymore. Do not even try to ask me to go dancing. It will never happen. 
  
  
  
• When I say that I can't be cured or that I'll never be healthy, I'm not trying to be negative. Like I've said before, my life is not CrossFit. I have boundaries and limitations. This is my reality and I've come to terms with it. I've accepted it. I hope others do too. 
  
• This needs to be reiterated but making plans is HARD. Other than doctors appointments, it's hard to truly keep anything. 
• Like most people, when I say "it's fine", it's probably not. I have an amazingly stoic face when it comes to pain in social situations that pretty much only my parents can recognize as a red flag. 
  
• Even the nicest people have their limits. 
• Don't be offended if I forget things you've told me. When my pain is bad, my memory can be extremely foggy and my short term recall is really bad. Most people refer to it as "fibro fog" and it's a real thing. Google it.  
  
• I don't want to be known as "the girl with pain". I want to be normal and treated like everyone else. I still want to be invited to things. I hate to play the pain card and truly feel happiest when I'm in a "normal" setting. 
• Just because you see me posting online, doesn't mean I'm feeling better. Sometimes I am in a ton of pain but my choices boil down to sitting and crying or distracting myself. 
• I always try to be in a good, positive mood but sometimes when you're running on no sleep with lots of pain, it compromises your mood. 
• Sometimes I just don't want to do anything with anyone. Or talk to anyone. I need my alone time. 
  
• My love life is sad right now. It's incredibly personal to me and something I plan on working on more when I move to London. I am still trying to figure out how to have as normal a relationship as possible. It'll take me awhile. Until then, don't bother asking if I have a boyfriend. 
• If I'm with you and we're meeting someone I don't know, my medical issues don't need to be brought up in the first five minutes, or at all. 
• Small, thoughtful gestures mean the fucking world to me. Actions always speak louder than words. 
• People that have known me forever have known me as an extrovert and that is changing.  Dealing with chronic pain drains me every day. 
  
• I naturally have a really hard time saying no to things and turning things down, please don't push me into doing more than I can. 
• Be open minded. 
• Even if I'm having a bad day or a lot of pain, your problems are still valid to me. Never think that because my problems seem more serious that I don't want to listen to yours. I never purposefully try and make it a competition.
• There are some things more than other that are hot buttons for me. And you'd never know what they are, but if you push one by accident, I don't mean to overreact. But it does happen from time to time. 

I know some of these things are probably related/redundant or hypocritical but I still struggle with figuring out what I need from my friends and family sometimes. 

I hope people understand that I never intentionally try to discuss my health for pity, sympathy or attention. I wish people could understand that dealing with this is just a big part of my life, whether I want it to be or not. I try really hard to help people that are dealing with the same problems. I don't want to be pitied, babied, fawned over or put on a pedestal. And certainly not be to looked down upon or judged. It's when people are uncomfortable with me that I become uncomfortable with myself. But, I am comfortable with myself and I own who I am.

Your Daily Beyonce Inspo

I love her. This video makes me smile. She is coolest. And I want to be besties. 

Beta Blockers AKA God's Gift To Everyone with Adrenaline Issues

This month has been stressful, there's no denying it.

The one underlying theme of this month is "Will I ever fucking learn to tone it down?" How is it possible I ALWAYS over do it?

 Now that I'm healing nicely from my breast reduction (there will be a post on this later), I am prepping for my move abroad for my MA. Now, normally, you would think preparing for school wouldn't be THAT big a task and I've also come to realize most people with Chronic Myofascial Pain, Fibromyalgia, Ehlers Danlos, etc. don't ever just MOVE ABORAD.

Sometimes I feel like I'm insane for doing this. Or maybe brilliant. Either way, it requires a lot of god damn meticulous planning. (This will also be a separate post--I'm backed up, I know! I'll be on this coming month.)

But, with my overambitious tendencies, my ability to continue to "over do it" had been in full throttle this month. My calendar was ridiculous. Somehow, I was acquiring multiple doctors appointments every day, on top of every other daily or semi-daily task that needed to be done. My anxiety was getting really bad.

 Sounds silly and trivial, but I promise going from doing literally nothing for two years but laying down and watching The Simpsons to being out all day, every day is A LOT. People don't understand the amount of energy I expend just trying to keep up with everyone and myself, ironically. I started getting cranky (read as: bitchy) and pain kicked in--I hated the world.

I'm getting better at for a few reasons.

Not trying to share my whole life and routine with the world but as you can see, I am starting to schedule myself "BREAK DAYS". No matter what, I am not allowing myself to schedule appointments or do anything overly tasking on these days. The productive part of me hates myself for it, but ultimately I need this. 

Reiki seems like a ridiculous thing to do but calmed me down to the point that when I left I felt like I just took the best nap ever (which is hard to come by when you have chronic pain) and was literally drooling uncontrollably. This isn't something I would do weekly, but probably monthly or just whenever I needed it. 

But, finally to the subject: beta blockers. A few years ago, my therapist suggested I had adrenaline based stress. A lot of people have questions about this with me. The best way I can explain it is because of the stretchiness from the EDS (that effects everything), my veins are so stretchy that when I'm stressed, mad, sad, happy, pretty much feeling anything, my adrenaline runs wild. I am definitely an adrenaline junkie. But my heart rate is also ridiculous. Last time it was taken down at Hopkins, it was 115 and I wasn't even feeling that stressed! 

So, FINALLY, my doctor let me try beta blockers (helps control the adrenaline) and my heart rate has been resting at 81. It doesn't feel as racy and it definitely takes a nice chunk of the edge off. I shockingly have no side effects from it either. #blessed

But, between the reiki, break days and Metoprolol (beta blockers) I am starting to finally calm down. My pain is better. Moving to Europe still feels daunting but not in the way where you'd find me in the corner of my room crying. 

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.