Trapped

Today is a bad day. For those who know what I mean, let’s just say I woke up without any spoons left. My head ached, my eyes were blurred and pained by the small light streaming through my window. It was a feat simply to look at the extraordinarily large numbers on the face of my cell phone, telling me I slept hours later than intended. It almost seemed worthless to get out of bed at that point. But I’d made a promise.

A good friend of mine has been pushing me to get back to counseling and made me promise I would go today. I know he’s right, but the thought of walking into the counseling center on campus feels like I’m admitting to failure. I’ve worked so hard just to reach normal, yet here I am back at square two and need help now more than ever. Some days are like this.

I tell people constantly that it’s okay to ask for help. It’s the strong thing to do. And yet, it feels so weak. It makes me so frustrated to admit that the stairs I’ve been climbing day in and day out have suddenly grown three stories higher, and I can’t see the top anymore. It all feels so out of reach.

But I made a promise. This is why we have friends. This is why we have support systems, because if it were only up to us, then the day would come when we would give up. I remind myself that there will always be days when alone I would give up, I would let myself stay trapped inside my head and locked inside my faulty body. My joints ache, the pain in my eyes is searing, but the feeling of worthlessness and failure with each of the half-dozen pills I take each morning is what really does me in. Those support systems are what hold us accountable for getting up and getting out of our heads.

It would be easy to stay in bed. It would be easy to keep all this frustration inside. It would be very easy not to post this. It is very easy to slack off on holding ourselves accountable and to wallow in self-pity, cursing the cage of pain and frustration. But that easy route will never free us.

Some days are difficult. Very difficult. That’s why we have friends, family, and other forms of support like you, my dear readers, to hold us accountable when we are too weak to do it ourselves. And so, after an hour of tears and pain, I am up. I have taken my daily medications, and I am getting dressed and venturing out into the world to tack on yet another branch to my support system: a new therapist.
When it’s hard to get up, reach out for a hand to pull you out of bed. When it’s hard to ask for help, find the person you can trust to force help on you even when you can’t ask. When it’s hard to speak up about what’s keeping you trapped in your own head, search for some way to get it out of you. Find the words. Build your support system.

Keep getting up.

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SuddenSight Branches Out – and needs your help!

wpid-img_20150723_122916.jpgHello readers!

As I teased earlier this week, SuddenSight will be making some changes this fall. One of those changes will be moving to a new .com platform! But no change comes without a snag or two…

The URL SuddenSight.com is already taken. Drat! So I need your help deciding on a new name. Here are a few I’ve been mulling around:

1. Sudden-Sight.com
2. SuddenSightHealth.com
3. MySuddenSight.com
4. SuddenSightBlog.com
5. ChronicHealthBlog.com

Would LOVE to get your feedback and alternative suggestions!

This fall, the blog will begin featuring guest bloggers discussing their journeys with a chronic disorder, a variety of allergy-friendly recipes, general health and wellness posts, and of course my continued personal posts.

Looking forward to taking this big step forward with you!

AIP Shepherd’s Pie – Going Paleo Deliciously

Besides now having an excuse to eat bacon every day, going AIP paleo has been a bit of a stretch for me. Thankfully, learning how to tweak recipes is a personal hobby of mine. In the past, I’ve cooked meals that were vegetarian, pescatarian, vegan, gluten-free vegan, raw vegan, dairy-free, nut-free, soy-free – you name it! The thing I haven’t done so much? Cooked meat. So I started researching a little over a month ago to be ready for the change.

Not only is eating AIP difficult at a restaurant, it can be pretty tricky at home, too. Especially for a graduate student who doesn’t have spare hours to slave away in the kitchen every day!

wpid-20150902_213912.jpgAutoimmune Protocol (AIP) Foods to Avoid – all grains, beans, legumes, dairy, soy, nuts, seeds, eggs, nightshades, processed sugar, and starchy vegetables!

However, you won’t believe the plethora of recipes available for every fashionable diet trend! Can’t eat soy? Type in soy free next to your keywords in the internet search bar. Can’t eat eggs? Type eggless. Have a gluten sensitivity? Type GF! I’m pretty sure some type of recipe for your favorite meal exists for every kind of food allergy (Internet Rule #38?)

Since I have chosen to embark on this journey into the bacon-lined world of AIP eating, I thought I might take you along with me. Every day, I’ll be trying out new, quick recipes. The ones I like, I’ll share here on SuddenSight.

Today’s treat is actually an original recipe by yours truly. I took the basic recipe for Shepherd’s Pie and made it AIP-friendly. Enjoy!

AIP Paleo Shepherd’s Pie
(for two – share with a friend or box up tomorrow’s lunch!)

wpid-img_20150902_215426.jpgIngredients for the top layer
2 sweet potatoes
1-2 TBL coconut oil
½ tsp salt
Pinch ground ginger
3 TBL coconut milk
Water for boiling potatoes

Ingredients for the bottom layer
1 TBL coconut oil
½ pound ground meat (I chose pork and turkey)*
½ tsp salt
1 tsp ground oregano
½ tsp ground majoram
½ tsp dried sage, rubbed into pieces in your palm or with a mortar & pestle
1 tsp dried rosemary, rubbed into pieces in your palm
1 tsp Worcestershire sauce (I used this Paleo Leap recipe, omitting the mustard, onion, and black pepper)
½ cup bone broth (I used this PaleoMom recipe, again omitting the onion)
1 TBL arrowroot powder
1 cup frozen or fresh early peas**
¼ cup thickly sliced carrots (optional)

*Note: I recommend using either ground beef or ground pork as your base. Otherwise, you risk the meat getting too dry.

**Note: Some people will categorize all peas as legumes. However, as early peas are still in the pod (like green beans), I consider their nutrient makeup to still be green vegetable. If you are also avoiding peas, you may omit them in this recipe or try another vegetable. I recommend using spinach or kale.

Set your oven to 400° and pull out a 9×5-inch baking dish.

Step One: Peel your sweet potatoes and cut into chunks. Place in medium saucepan and cover with water. Bring to boil over high heat and allow to continue boiling.

wpid-img_20150902_215703.jpgStep Two: Heat up the 1TBL coconut oil in your skillet over low-medium heat (I prefer cast iron). Mix together your ground meat, salt, and herbs. Crumble the meat mixture into the skillet and cook until browned, stirring occasionally. This should take 5-8 minutes.

Step Three: Combine Worcestershire sauce, broth, and arrowroot powder. Once the meat is cooked through, add the sauce. Let this simmer until the sauces thickens into a thin roux, stirring frequently. This should take 2-3 minutes.

Step Four: While the meat layer is cooking, check on your boiling sweet potatoes. They should be soft enough to mash. Once soft, drain the potatoes and mash them with a fork. Add your desired amount of coconut oil, salt, ginger, and coconut milk. (Because I am not using Paleo for weight-loss, I prefer to use additional oil to increase my caloric intake.) Mash together until smooth.

wpid-img_20150902_215918.jpgStep Five: Add the peas and carrots to your meat mixture. Cook another 2-3 minutes. (If you are using a leafy green vegetable in place of the peas, wait until the last minute to add them.)

Step Six: Pour your meat layer into the baking dish. Top with sweet potato mixture, and bake 15-18 minutes. Enjoy!

Pressing the Reset Button

handNow and again, there comes a time when we just need to take a breather and hit the reset button on life. Frustrations mount, stresses build, and complications twist everything into a knotted, tangled mess. You can’t always walk away from your stressors – usually you can’t – but you can take a step back. You can take a moment to yourself and reenter the situation with a fresh perspective.

This month, that’s exactly what I’m doing: Resetting.

Resetting My Body – Starting AIP

For those who have been following the blog for awhile, you know that I’ve had trouble with chronic fatigue for about a year and a half now. For months at a time, I would need 10 to 14 hours of sleep every day. Even awake, I wandered through life in a fog, exhausted and unmotivated. Two things entirely contrary to the life of a grad student!

carbsWhen my doctors couldn’t figure out what was wrong, I decided to take my health into my own hands. I started researching my symptoms and found the autoimmune protocol paleo diet. No grains, no legumes, no dairy, no nightshades, and no starches. Yikes! As someone who has spent most of the past 10 years as vegan or vegetarian, it was pretty scary to think about eating animal flesh at every meal. However, all of my symptoms kept pointing to the AIP as a way to reset my digestive system and stop the extreme autoimmune reactions causing my fatigue and inflaming my joints.

This past weekend, I celebrated my birthday with all my favorite foods! Ice cream, cupcakes, pasta, chocolate… 28 never tasted so good. September first marked day one of my 30-day AIP reset. I’ll be updating SuddenSight with my posts about the experience, so keep checking back for updates!

Resetting My Mind – Taking a Step Back

The fatigue, as well as numerous setbacks with my eyesight since January, made finishing my master’s degree this summer, well, difficult. I did manage to turn in everything and have my paper accepted (hooray!) Still, moving forward I decided I needed to recognize my physical limitations.

Even on my good eye days I read at half the speed that others in my program read. When I’m sleeping 10 hours a night, it becomes virtually impossible to keep up with the 60 to 70 hour work week required to keep up with three graduate classes and teach a class. So I took a step back and slowed things down for a bit to let my body catch up.

I’m only taking two classes this fall, and I’m pushing myself to make more time for yoga classes and cooking – my favorite relaxing hobbies.

Resetting My Blog!

ice creamTaking all of this into account, I’ve also decided to shift the focus of this blog a bit. I don’t want to spoil too much, but this fall SuddenSight will be relaunching with an all-new look! Get ready for more health and lifestyle posts, a recipe section, and guest bloggers featured each month.

Stay tuned for more news!

Waking Up: How I Took my Health into my Own Hands

For the past year, I’ve been tired. Exhausted, really. I’d sleep anywhere from 10-12 hours a night, but still walk around like a zombie all day and take frequent naps. I was miserable. But according to my doctors, nothing was wrong.

Vitamin D levels? Normal with my daily supplements. B6 and B12? Fine. Thyroid? Enlarged, but showing no signs of hyper or hypothyroidism. So why was I so exhausted all the time?

I talked with my GP, with my rheumatologist, and with my friends who have similar autoimmune issues. My GP wasn’t very concerned at all, but after six months of pushing she recommended I start on Wellbutrin, an antidepressant. Don’t get me wrong, I’ve had my fair share of depressive episodes, but this didn’t seem like one of them. I was exhausted, sure, but I didn’t feel sad or upset. Still, I started taking a low dose of the medication. It didn’t help.

IMG_20150804_001340My rheumatologist seemed even less concerned. Fatigue is associated with some autoimmune disorders and can come as a side-effect of the Remicade treatments. I spoke with his PA Anna, and she mentioned that some patients have seen positive results after changing their diets. While she couldn’t medically recommend a specific diet, she did tell me that many patients she (and many of her colleagues) spoke with reported lessened inflammation with certain dietary restrictions: no gluten, no dairy, no alcohol, no refined sugar, etc. I’d tried some of this before to no avail, so I packed that discussion into the back of my mind.

Taking my health into my own hands

When both doctors reported no signals for the fatigue in my bloodwork and seemed rather unconcerned with getting to the root of the problem quickly, I took matters into my own hands. Because of the Remicade treatments, my rheumatologist orders a full CBC (blood workup) every two months and posts the results online. These worksheets became my obsession.

First, I will say this: no matter what your Google search turns up, check with your doctors about their validity. My GP has had to talk me off many a well-intentioned ledge where I just knew I had figured out the cause of my fatigue. Never be afraid to ask questions, or to ask about your options. Remember: it’s your body. Your doctors are there to help and have a lot of knowledge, but they aren’t perfect. If they say something won’t work, politely ask why. If you aren’t satisfied with that answer, don’t be afraid to ask another doctor.

Keeping this in mind, I started my own research process. When the usual signals for fatigue were fine, my GP asked to see the bloodwork from my rheumatologist. I should note that I am currently in the process of switching GPs because my previous practitioner is changing her practice. I wasn’t able to see her again before the change and share my findings, but I had put together a year’s worth of CBC workup results. Looking through them, I could see clearly when my surgeries had taken place. The neutrophil and white blood cell count would shoot upwards immediately following the procedure, then settle back to a normal level before the next workup.

I also saw a recurring pattern: high MCV, low alkaline phosphatase. My first thoughts were, “What the hell is that?” and “Why haven’t we talked about this before?”

Maybe it’s B12 malabsorption

And so, I Googled… MCV stands for “mean corpuscular volume,” and the higher it is, the larger your red blood cells. This can indicate a condition called macrocytosis, or macrocytic anemia, which is often a sign of B12 deficiency. A vitamin B12 deficiency does point to my symptoms – fatigue, depression, brain fog – but consistently my bloodwork has shown normal B12 rates. However, normal B12 levels don’t necessarily account for your actual B12 absorption rate (and can often underestimate macrocytosis). Some sites recommend a methylmalonic acid test. Buildup of methylmalonic acid in the urine indicates that your body isn’t using B12 the way it’s supposed to.

In other words, the tests could be wrong, and there are better tests I can try.

Other relevant causes for the high MCV could be a folate deficiency (my levels are fine) or past chemotherapy treatment. I was on cyclophosphamide (a chemo drug) for more than a year, so that could be the cause. (Also, myelositic diseases, megaloblastic marrow, leukemia, liver disease, etc…)

My solution: I’ve made an appointment with a new GP. I plan to discuss the B12 testing process with her and start on a B12 supplement.

Maybe it’s hypothyroidism

Here’s another case where my CBC indicates normal thyroid function, so says my rheumatologist, but several sites indicate that there are better tests to determine hyper or hypothyroidism. Hypothyroidism is often linked to an autoimmune disorder, Hashimoto’s disease. It also runs in my family. The only major difference I see in the symptoms of hypothyroidism and my own are my high heart rate, lack of weight gain, and lack of a goiter (thank goodness!) Still, it’s probably worth checking out.

My solution: Talk with my new GP about better thyroid testing.

Maybe it’s alkaline phosphatase deficiency!

This one seems pretty obvious, considering my alkaline phosphatase levels have been consistently low for at least a year. Beyond fatigue, other relevant symptoms include cold intolerance (check) and rapid heart rate (double check), as well as shortness of breath, constipation, and extreme weight-loss. And guess what? It can also be caused by B12 deficiency and hypothyroidism – as well as aplastic anemia, anemia, and myelogenous leukemia. So far, my symptoms and CBC abnormalities seem related.

All of these – B12 malabsorption, hypothyroidism, and alkaline phosphatase deficiency – can be subsequently linked to malnutrition. In particular, the need to increase and regulate levels of vitamins A, C, B6, and B12, folic acid, and phosphorous.

My solution: Look at my normal diet and make some changes.

Maybe it’s my diet

IMG_20150806_205816A few years ago, I ran into Christina, an acquaintance from high school, at the Five Points MARTA station. It was particularly surprising because Christina lives in Florida, we hadn’t spoken since I graduated ten years ago, and we were heading in the same direction. Talking with her on the train, I found out we had both been dealing with autoimmune disorders (me: rheumatoid arthritis, her: Hashimoto’s disease and narcolepsy), and we were both in graduate school for our doctoral degrees (me: political science, her: biomedical science with a focus on intestinal immunology).

Basically, she’s a badass, and you should check out her page!

I’m not one to believe that “things happen for a reason,” but I was glad to have had this conversation with Christina. Really, I wish I’d paid more attention and started my research on intestinal health back then, but grad students will be grad students… She shared her research on the link between autoimmune disorders and “leaky gut” – where your intestinal wall is too permeable and lets particles seep out into your body. Most of the current treatments for autoimmune disorders focus on inflammation and the overactive immune system. New research, like that of Christina and other scientists like Dr. Sarah Ballantyne, focuses instead on intestinal health. In other words, they are trying to treat the potential cause, rather than just stifle the symptoms.

When intestinal health kept popping up in my searches, I contacted Christina again for advice on where to start. She again mentioned the benefits of the paleo diet. If you haven’t heard the specifics yet, the essential idea behind the paleo diet is that our bodies haven’t adapted to many of the foods we regularly eat today. Proponents of paleo eat mainly meats and non-starchy vegetables, shying away from processed foods, sugar, and grain. The stricter autoimmune protocol refines this diet even more, acting as an elimination diet. For the first month, participants will avoid all grains, processed sugar, all nightshades, starches, alcohol, dairy products, and eggs. The will increase consumption of seafood, organ meats, and fermented foods and limit fruit intake. After “resetting” their system, participants slowly reintroduce foods to find out which are triggering an abnormal autoimmune response.

My solution: Try something new.

Going Paleo

For someone who spent 5 years as a vegan and generally tries to eat very little meat, going paleo sounded like a nightmare. Not only would I be giving up some of my favorite things (Ice cream! Baking!), I would be forcing myself to shovel down meat at every meal (very expensive, considering I only buy products from humanely treated animals). However, the exact months I went vegan in 2007 were the same months I started noticing joint pain, which quickly blossomed into a full-fledged flare. It’s also something I had never tried before, and I do rather enjoy seafood. So I decided to give it a try.

IMG_20150805_221532Whether or not you buy into the explanation of ancestral nutrition, the paleo diet does include much higher levels of the nutrients I may be deficient in (A, C, B6, B12, folic acid, healthy fats, and phosphorous). I started the autoimmune protocol (AIP) diet on July 15, 2015. On August 3, my alkaline phosphatase levels were already in the normal range, but my MCV was still high. By August 10, I had noticed significant improvement in my daily routine. Slight joint stiffness still made going to sleep a bit difficult, but when my alarm went off in the morning I was actually awake. Now I can get out of bed in the morning, rather than lying there another hour and a half trying to force myself to function. In the past few days, I’ve noticed the brain fog lifting, and naps don’t seem like such a necessity. The one time I caved and ate rice, my left knee screamed for three days!

I’m not saying paleo is the exact and only reason for the improvements I’ve seen. I’m certainly not recommending it as a one-size-fits-all “cure” for RA. I am merely sharing my own story from my own path. I cannot stress enough that everyone’s body is different and no one should change their diet drastically without fully understanding how to get the right nutrition from the new diet plan.

Remember: it’s your body, take care of it!

How to Throw Your Best Pity Party Ever!

538524_10100307570358459_563922595_nYou just found out your best friend has been sleeping with your significant other. Your cat has the flu. Your job promotion went to the guy two cubes down who can’t even find AutoSum in Excel. The fecal matter has found its way up and into the proverbial fan, and life seems like it just can’t get any worse.

We’ve all been there. From tragic hair days and fender-benders to volcanic eruptions of hot messes, sometimes the only thing that can truly make you feel better is a party. A Pity Party, that is!

I know what you’re thinking: wadded up tissues in front of a Meg Ryan marathon with a gallon of Moose Tracks slowly melting into sugary-chocolate soup nearby. But a Pity Party doesn’t have to be a cliché. There is so much you can do with this traditional fête!

So dab your bleary eyes, roll up those snotty sleeves, and let me guide you through the magical makings of a Pity Party miracle.

Step One: Theme

More often than not, a Pity Party is spontaneous and comes with its own pre-packaged theme delivered to you FedEx á la Universe. When this happens, there may be little else to do than dress it up in a sparkly sweater while calling your mom. But that doesn’t have to be the end! Yes, the given theme might feature cancer, but that doesn’t mean you can’t accessorize with adorable puppy photos from the Internet. I find that puppy-themed pity parties are best when you make sure to avoid adoption websites – else you end up with a new furry friend (or ten).

If you’re having a real downer, you might set the mood with Alanis Morissette’s Jagged Little Pill album or Beyoncé’s feminist power-ballads (for anger) and Adele’s first few hits or some old-school Goo Goo Dolls (for subtle angst). If you’re feeling really down, you can always break out Babyface, Tori Amos, or the big guns: “Here In Heaven” by Eric Clapton.

Whether your Pity Party is intended to cheer you up or help you let out all the frustration, choosing the perfect theme is key.

Step Two: Decor

What would a party be without the proper decor? Even fraternities have learned to spice up their keggers with Tiki torches and brightly-colored leis. Once you have your theme, decor and wardrobe are your primary means of of setting the tone.

First things first: what are you wearing? My personal favorite outfit for pity parties is a long evening gown, accessorized with a sparkly tiara and bottle of cheap champagne. If you’re in a darker mood, you might try slapping on some thick black eyeliner and crawling into some pj’s from the bottom of your clothes hamper. Nothing says “Pity Party” quite like raccoon eyes and the strong, sour odor of cotton that’s been soaking in B.O. for the past week!

You may go with the traditional look of spreading boxes of tissues throughout your apartment. In that case, you might consider dressing up this version of the Pity Party with monogrammed handkerchiefs. I also highly recommend the childlike solace of a sheet fort, where you can blubber in privacy beneath a linen canopy to block out any and all happy light from the outside world.

Yet another route may be to decorate the living room with Styrofoam boxes of old Chinese food and the remnants of ripped-cardboard “plates” salvaged from multiple delivery pizzas. Which brings me to my next point…

Step Three: Food

As aforementioned, ice cream is the traditional food du jour, served with any and every type of alcoholic beverage. However, there are a multitude of flavors and brands to choose from! Fear not the option of buying several pints when you cannot decide on just one.

Beyond the world of cold and creamy lies a variety of comfort food choices: macaroni and cheese, chicken and dumplings, apple pie, chocolate cake, strawberry cake, cheesecake, carrot cake, really any kind of cake, truffles, salted caramels, lemon bars, candy bars, peanut butter from the jar… You get the idea.

Whatever you serve, just be sure it has enough calories to sustain a horse.

Step Four: Invitations

This may well be the most important part of the Pity Party. I recommend quality over quantity in your guest list. Know that pity parties can be difficult to fill, but they certainly let you know who really matters in your life. Do not be too upset if someone declines; much like Santa Claus, you can put them on a different kind of list later. The important thing is that you surround yourself with exactly the right people.

Or, if you prefer, lock the door and turn off your phone. Give yourself some time to quiet the madding crowd out of your thoughts, and allow yourself to bask in the rich emptiness of a party of one.

In all seriousness, take note of your Pity Party for exactly what it is, and be careful to remember exactly what it is not. It’s okay to take a moment (or an evening) to be upset and frustrated, to cry or shout at the television, to be selfish for a split second in time. Just make sure you’re using good coping skills and not distorting your situation too far out of proportion. Only invite those nearest to you to participate, and don’t leave them cleaning up the mess when you’re finished.

Know that at the end of the day, the world is still turning on its axis. There will always be someone out there worse off than you and someone better off than you. There will always be things worth crying over, but there will also be many things worth smiling about.

So take your moment. Have your party. Then throw out the trash and move forward with tomorrow. Embrace your life – whatever it may be.

A Good Day

teachingpicSo often when you have a chronic disorder, especially a painful or debilitating one, it can be difficult to talk about the good days. That seems counterintuitive, right? Shouldn’t we want to talk about the good days more than the bad?

Of course we do! Thinking of the good days is what gets us through the bad ones. And yet, so many times when I’m writing on this blog, posting on Facebook, sharing on Twitter – I find myself posting far more frequently when I’m frustrated or hurting. Certainly those are times when I need support – of course! And I have to admit that posting when I need support has made a tremendous difference in my recovery time and overall attitude. Yet I also find that posting when I’m happy – on the good days – is just as important!

So here today, just for all of you, I am posting my sheer happiness in waking up this morning on a gray winter day in Atlanta, when the silver lining seemed so shiny and bright…

Mornings

Mornings have never been particularly easy for me. As a kid, I had insomnia, and waking up during high school often meant three different alarm clocks that invariably were destroyed or slept through. But for the past nearly seven years, mornings have been near impossible.

If you haven’t yet read about Christine Miserandino’s Spoon Theory, it’s the idea that everyone wakes up each day with a certain number of spoons with which to allot varying daily tasks. Take a shower? Spoon. Go to work? Three spoons. And so forth. But we don’t all get the same number of spoons. And for some of us, a shower can cost a helluva lot more than a single spoon.

Mornings for the past seven years – since my SJS episode – have been like waking up with more than a few of those spoons shoved into my eyes. I’ve undergone around 15-16 eye surgeries, some here in Atlanta and others with a fantastic SJS specialist in Miami, Dr. Tseng.

It was my first surgery with Dr. Tseng in 2011 that prompted me to start this blog. He was giving me sight back in my right eye. While compications with my rheumatoid arthritis (RA) did not allow that sight to last, his surgeries did give me something else. Through resurfacing the eyelid, he removed the constant pain from my right eye. And last week, he did the same with my left.

Surgeries are never fun. I currently have a “contour bandage lens” in my left eye to keep the stitches from scratching my cornea, and I’m on several different medications for after-surgery pain and inflammation. But when I woke up this morning, something miraculous happened…

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Words really cannot describe how incredible it was this morning to open my eyes and simply see. No pain, no fear, no fatigue from the fear of pain. Just sunlight creeping into my room, wishing me a happy morning…

And a very good morning to all of you, dear readers! Keep your warm memories snuggled near to you this winter, and the happy sunshine under your wings!