Wednesday, January 21, 2015

Glam With A Touch of TENS

Lately I've been thinking about what my "new normal" will be. Above is a picture of my outfit on the way to the Tom Wolf inauguration gala. Cocktail attire, Balenciaga with the touch of TENS unit. 

I am a Type-A overambitious perfectionist. I always over do it. Now, on a daily basis, I start to think to myself "What do I think I can handle?" and then I do slightly less in a very George Costanza-esque fashion.  

Naturally, having physical limitations will always be a struggle for me. It will never feel natural. I don't like to be told I can't do things--even before I was diagnosed. Starting to slowly accept that I can eventually have my life back with limitations if I keep working hard and continue to make smart choices, making my health a top priority. Limitations are not bad, not good--just my normal now.

I'm realizing now that "normal" is subjective. Look at anyone's house--nothing is ever normal. Everyone has problems whether they be physical, psychological, etc.  People have strange habits. Rather have a stool in front of my sink or a closet of odd MPS related contraptions than be a hoarder or have 17 cats. 

If I want to be able to live my life independently eventually, I will most likely need to make adjustments to way I do things. Maybe I need to sit in a chair while I load and unload laundry and figure out how to make daily lifestyle chores less painful, but if it means I get my life back and get to do what I want, it doesn't feel like a sacrifice. I'll do what I have to do to avoid pain.

Saturday, January 17, 2015

On Being A "Highly Sensitive Person"

Over the last two years, I have figured a lot out about myself and it seems like every time I look into a seemingly small thing, I'm bound to find 3 more issues behind it. Sometimes it seems like it's never ending. My mom has been saying to me for years now "Maybe someday soon we'll finally figure out all your issues!" shortly to find out I have more issues.

When my therapist first told me a year ago I was a "highly sensitive person", I was kind of annoyed. Mentally, I don't think I'm sensitive. Working in the fashion industry has given me a pretty thick skin and I think I tend forgive people pretty easily if I can psychologically understand where they're coming from or just completely forget it. This is where I thought she was coming from. After it was mentioned to me and researching a little more, I realized this is not what she was referring to. My body is sensitive. It turns all the stressful things that should be just mental and churns it into physical pain in my body. I am princess-and-the-pea kind of sensitive. My dad jokingly calls me "delicate princess". I don't know if it's the combination of having lived in NYC + chronic pain, but this seems to be the aftermath.

But, I think that because I have been living at my parents' home in the middle of nowhere and am by myself most days, my sensitivities have increased. In one of my CMPS/FMS support groups, someone posted a quiz and I took it. These things are slowly getting better, the better I feel. I couldn't even listen to stressful music (i.e. rap, rock, etc.) for a while and now I'm starting to feel like my normal self again. Things become easily stressful for me and the best way for me to calm down is just to try in relax in a dark room with soothing music.

Here are some of the statements below:

-I am easily overwhelmed by strong sensory input.
-I seem to be aware of subtleties in my environment.
-Other people’s moods affect me.
I find myself needing to withdraw during busy days,into bed or into a darkened room or any place where I can have some privacy and relief from stimulation.
-I am easily overwhelmed by things like bright lights, strong smells,coarse fabrics,or sirens close by.
-I have a rich,complex inner life.
-I am made uncomfortable by loud noises.
-I am deeply moved by the arts or music.
-My nervous system sometimes feels so frazzled that I just have to go off by myself.
-I am conscientious.
-I startle easily.
-I get rattled when I have a lot to do in a short amount of time.
-When people are uncomfortable in a physical environment I tend to know what needs to be done to make it more comfortable (like changing the lighting or the seating).
-I am annoyed when people try to get me to do too many things at once.
-I try hard to avoid making mistakes or forgetting things.
-I notice and enjoy delicate or fine scents, tastes, sounds, works of art.
-Being very hungry creates a strong reaction in me,disrupting my concentration or mood.
-I become unpleasantly aroused when a lot is going on around me.
-I make it a high priority to arrange my life to avoid upsetting or overwhelming situations.

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. :)

Wednesday, January 14, 2015

My Love/Hate Relationship With Food Since My Diagnosis

This is a hard thing for me to talk about and a post I had been dreading for awhile. Maybe even more so than the pain itself. It wasn't until a few months ago that I could even say the word "weight" without starting to cry. I have gone up and down on the scale in the past but never like this. Once I got into my college routine I naturally lost enough weight to a point where I was incredibly comfortable with where I was. I walked (read as: pretty much ran) miles a day and was too busy to snack. At my smallest I was a size 4. Before my pain started, as long as I was continuing to run around like a mad woman, I could eat what I want and manage to maintain.

I think it first started when I was working after graduation in my new job. I was so physically and mentally exhausted from my job that I just ordered take out all the time. After I was diagnosed and my pain hit me like a ton of bricks, food became even trickier for me. After I was disability from work, I couldn't grocery shop or stand long enough to cook anything I bought so I needed to eat things that were instant and continued the take out trend.

Even once I moved home, I solely relied on my parents all of my food. Days that I had major, major pain, I told myself I deserved it and ate literally anything and everything with little to no exercise or even mobility. There were months I couldn't move- period. It was a good day if I made it up the stairs.  Naturally, 2 years in, I went from a size 6 to a 14 and gained 50lbs. It's still hard for me. I've received a general amount of pressure from my weight gain--when I gained my most weight I was self conscious about people seeing me eat.

But once the pain kicked, that was it. I used food as crutch and I was fully aware of it. I didn't care if it wasn't good for me because good food made me happy and I figured once I was "better", I would lose the weight. Good plan, right? (Side note: I love cooking/baking/eating in general. I am a huge foodie and at one point in college I seriously considered being a food stylist.) It was my only form of control I felt like I had on my worst days. At that point, I couldn't control my pain and I just felt lost. I had a closet full of clothes that didn't fit. On any given day with pain (which was most of them), I would say to myself "I deserve ice cream for dealing with this shit." Or mashed potatoes. Or anything. I just wanted so badly to feel comfortable.

If I had pain and was hungry, at least I knew I could solve my hunger. If I could physically make it out to a restaurant (rare), I went buck wild and ordered the most ridiculous thing I could fathom, usually including apps, entrees and dessert. In my old days, if I had gotten to this point weight wise, I'd be dieting and doing serious gym time. But once I was diagnosed, I had masked my depression with cooking and baking when I was able to.

Limitations are still my problem. I can plan a week's worth of meals, feel good, go out and buy the groceries and then have 3 bad days after that. By that time, all my groceries would go bad. I've also had to take into consideration things like hypoglycemia (caused by my trigger points) requiring me to eat every 2-4 hours (which I'm still not used to) or my whole body starts shaking, sweating and I start to throw up. With the severity of my acid reflux, I have a STRONG sense of smell since my nose surgery and there are certain foods that even if I smell, I throw up. I've been working for months to figure out how to make a good salad dressing because every single dressing in the grocery store has vinegar/mustard, which is another ingredient I've had strong reactions too. I've cut alcohol (which I never drank much in the first place) soda, and coffee out of my diet. There will be another post on this, but alcohol was not just cut out of my diet for GERD purposes---it dehydrates my body/muscles and made my pain worse.

Now I need to have healthy meals/snacks consistently (which sounds easy, but I always thought I was invincible and skipped meals if I got too busy) and watch things that trigger my acid reflux. The other major issue has always been my over-ambitiousness to lose the weight--I would work out so hard that I would hurt myself. This would cause me to be bedridden from days to weeks. Because of my low blood pressure from hypermobility, I also get extremely dizzy so I also need to keep a lot of salt in my diet.

Now that I am slowly getting better, I am starting to see a difference. I've seen a dietician several times and now have a personal trainer who specializes in chronic pain. My trainer is helping significantly and I am finally starting to get excited about going to work out! I'm start understand what's hurting, when and what I can do for it, but most importantly when I'm doing too much.

I've recognized things I naturally gravitate to (like bagels and ice cream) and substitute them for quick, healthier things that are still fast to make. As much as I can (with the exception of injection days), I am aiming to eat as many non-processed, whole foods with high fiber as possible. The high fiber helps with IBS. Like I mentioned previously, I don't eat anything with vinegar, coffee or alcohol anymore. Most of my key items: almond milk, organic high fiber cereal, heathy muffins, green smoothies, apples, salads, soup, fish, "healthy" desserts, hot lemon water, veggie omelets, whole grain e'erythang, popcorn, eggs, slow cooker steele cut oats, organic yogurt, a shit ton of water and tea and as many fruits and veggies as I can stand by slowly cooking them into other things, you get it. Substituting doesn't feel like I'm constantly sacrificing what I like and I don't want to deprive myself. I also try and cut down my portions.

I make a lot of different things all the time now but these are some of my go to fast and yummy recipes (most of the stuff I eat now doesn't need to be cooked since I am slowly working towards my whole foods goal):

Turkey Meatball Soup with Spinach and Farro (sometimes replace the farro with barley because Hershey's a shithole and sometimes doesn't have it) but this is a very good and filling lunch

Deep Dish Cookie Pie- this girl's healthy dessert blog is AMAZING--this recipe has a ton of chickpeas in it and is my favorite healthy dessert. So much fiber, I can't even handle it. 

Amazing Grass Green Superfood Berry- this is a great green supplement smoothie that I had 2 oz of water, 6 oz of orange juice and 3/4 of a banana too. Great for breakfast. Obviously, a green smoothie with real fruits and veggies would be better, but this is easier for me so it stays for now.

Slow Cooker Apple Pie Steele Cut Oats- this is super easy to make ahead of time and last for awhile.

Pumpkin Cream Muffins- only 75 calories and delicious, seriously...

Spinach and Mushroom Quinoa- quinoa doesn't always cook as fast as I'd like it to but this makes a pretty good pilaf style side dish

Roasted Shrimp Quinoa Spring Rolls- these are a little messy (the quinoa falls out) and hard to eat but totally delicious and worth it.

Banana Oatmeal Chocolate Chip Muffins- easy, yummy, GF, what more could you ask for?

I've finally got a good salad dressing and I'm going to start experimenting with other healthy desserts and veggie noodles like zucchini and sweet potatoes. 

Have a good evening. :) 

Sunday, January 11, 2015

Jennifer Aniston Portrays Chronic Pain Sufferer in New Movie 'Cake'

So, I just read on NPR that a new movie is coming out starring Jennifer Aniston portraying a character with chronic pain. Comes out late January--I am so excited/curious to see how accurately it is portrayed. Thrilled Hollywood is finally starting to shed light on this.

Here's a snippet from the NPR interview:
On how she played a character who is experiencing pain
It was a lot of studying the back, the leg, the neck. Pretty much every single part of her body was hurt, injured. And you really do start to manifest odd little, you know, cricks and ... pinches in your neck and lower back pain. ... Every week I would have some form of body work, just to make sure, you know, my body didn't kind of lock into any of that permanently. ...
Talking to women, or men, who are suffering from chronic pain on a daily basis — it is so unimaginable. I mean, I was so grateful for my body at the end of the day.