JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

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Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Monday, November 28, 2011

Cold weather and stiff joints

Brrrr!!! Winter is coming, the technical first day is December 22nd this year.  Some people enjoy winter, and find it almost romantic.  Cuddling under blankets, sitting in front of a roaring fire while sipping on some hot chocolate.  While this may sound nice to some people, others especially those with arthritis, think otherwise.

Winter is a pain for those of us who suffer from RA -- literally! I can feel the cold weather in my joints though, some people find this expression so crazy but it's very true. Especially when I wake up in the morning on cold days, my joints feel extra stiff and achy.  The cold weather makes it tougher for us to get up in the morning, taking longer than usual.   I believe this happens, because when we're cold, we tend to curl up, especially at night, in the morning resulting is us being stiff and in pain.  I searched around the Internet to see if there was any research as to why this may happen, there was hardly anything, but I'll share with you what I found.

This statement, taken from a research study done at the National Institutes of Health (NIH) explains why us RAers may be able to feel a change in weather. "As the weather changes, so can the pressure in your joints. If you think of the tissues surrounding the joint as a balloon, Gourley explains, the balloon around the joint will expand a little when air pressure is low. The expanding tissues put pressure on the joint. People can actually feel changes in air pressure in their joints, which is why some people say they can predict the weather by the pain in their joints." 

To help prevent us curling up, and getting stiff joints, it's important to stay warm.  When going out, dress in layers, warm your car up before getting into it, and at night use an electric blanket or warm clothes and blankets in a dryer before using them.  Drinking warm liquids, and keep your joints moving can also help prevent them from getting stiff.  During the day, I'll get up and just walk around my apartment, and keep repositioning myself on the couch so I'm never in the same position too long. 

The cold temperature associated with winter can not only affect Rhuematoid Arthritis, but many other illnesses as well.  Raynaud’s disease is a condition in which the blood vessels quickly narrow, reducing the flow of blood and causing the skin on the fingers, toes and even the nose to temporarily turn white, then bluish.  It's important for those with Raynaud's to wear warm socks, and warm mittens instead of gloves, keeping your extremities warm.  Sjögren’s syndrome is another illness affected.  With Sjögren’s the immune system  attacks the body’s moisture-producing glands, leading to dryness of the eyes, mouth and other tissues. Cool, dry weather can exacerbate the situation. Those with this condition, need to add moisture back to the air and body to help.  Using a humidifier to raise the humidity level in your home and use lotions after bathing to keep skin moist. Use artificial tears for dry eyes and keep a water bottle on hand to sip to relieve dry mouth. Be careful about using mouthwashes with alcohol or over-the-counter cold remedies, either of which can worsen dryness.  Breathing problems such as Asthma, can also cause difficulty with breathing.

It's important that if you experience any symptoms to discuss them with your doctor.  Keep warm keep moving and be very careful when walking on icy grounds.  Wishing all  a warm, pain-free winter!

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Saturday, November 26, 2011

Thankful for...

Did you know that the first U.S. Thanksgiving holiday was held in 1621 at Plymouth in present-day Massachusetts?
I live in Mass, about 40 minutes away from Plymouth.  It first began as a celebration for a good harvest, and was celebrated on all different days each year.  It wasn't until 1863 when Abraham Lincoln was president, did he decide that Thanksgiving be celebrated on the last Thursday of November each year.  In 1941, president Franklin D. Roosevelt changed Thanksgiving to occur on the fourth (not always the final) day of November, and signed a bill with Congress, making it a national holiday. 

Thanksgiving being my favorite holiday, I was thinking of writing a blog for everyday of November something I'm thankful for, instead I'll just compile it into one blog.  I love Thanksgiving so much, because it isn't about presents or material things, like Christmas sadly seems to have become for most people.  It's day we can be thankful for all we have, and spend the day with love ones fill with good food, love an laughter. 

30 Things I am Thankful for:

#1:  I am thankful for my wonderful fiance, Adam.  Who I'm not sure I would be where I am today, without him.  He's the most loving, caring and understanding person I've met, especially through all my health endeavors.  I love him with all of my heart, and more.
Adam & I
#2: I am thankful for one of my dearest friends, Diana.  She's another caring, kind person who I can totally be my dorky self around.  We have a connection that I don't share with others, and I think it's what makes our friendship stronger.  I love her very much!  (Mischief Managed)

#3: I am thankful for my other dearest friend, Brenna. Her and I met through having RA together, and share health stories.  Her and I can totally, 100% understand each other, and be able to comfort one another in ways others can't.  I love her and happy to have met her (if only we had met sooner! socks!)

#4:  I am thankful for my two cats, Harley and Mrs. Nesbitt.  While some may find this silly, they are great companions when I'm feeling sick.  I swear they know when I'm feeling down, they'll cuddle with me or do something that totally makes me laugh.  They just know how to make me feel better without even trying.

#5: I am thankful for my health.  While my health is pretty crappy, and I am constantly having something go wrong, it's made me the strong person I am today.  I know I'd be a completely different person if I hadn't been dealing with this all my life, and I'm not sure I'd like the person I was without it.  Also, things could be way worse off than they are, and I am VERY thankful for that. 

#6: I am thankful for my Dad.  He passed away last year, and am incredibly sad that he's gone, and miss him very much.  I am thankful for the time I was able to spend with him, and know he is with me, always.

My dad & I

#7: I am thankful for my family.  I have such a large family, and they're so fun to be around!  It's sad we only get together on holidays because of every one's busy lives, but it is still wonderful to be able to have that time together.

#8: I am thankful for being able to go forth with my photography.  While I'm still new, and learning things everyday with it, I'm lucky to be able to use my creative eye in ways that make me happy!

#9: This may sound ridiculous, but I'm thankful for books.  Whenever I am feeling down, I love to get lost in a book, getting wrapped up in a story, crying and laughing with the characters.  It helps to get lost in a world and let my imagination run wild, it helps me forget the things I worry about.

#10: I am thankful for Modern Medicine.  Without it, I'd be stuck in a wheelchair not being able to move, with my body fastly deteriorating, or I'd probably be dead.  A lot of the medicines I am on, or have tried in the past are indeed harsh, they still have helped me have a [hopefully] longer life.

#11:  Humor!  Laughter is indeed the best medicine.  I am so thankful for people making me laugh (especially Adam, Diana, and Scott), and being able to make others laugh.  Most of my jokes are corny and I sometimes mess up movie lines, it's fun to laugh! Hahaha!
Brenna & I, being silly!

#12: I'm thankful for having a roof over my head, a place to call home.

#13: I'm thankful for the food I'm able to eat.  SO many are without food, I wish I had the means to help those in need.

#15: I'm thankful for my wonderful doctors, especially my Rheumatologist who not only goes out of his way to make sure I'm cared for, but actually listens to what I have to say and let the decisions be mine.  He doesn't tell me what to do, but rather give me options and his opinions. 

#16:  Thankful for the men and women who serve our country.  While I think the war is ridiculous, they still risk their lives everyday.

#17:  I'm thankful for the food I eat everyday.  So many have to go without food, it's sad.
Harry Potter Cupcakes I made

#18: Thankful for education, I was lucky to be able to go on to college and further it as well.

#19: Heat! Thankful to have an apartment with working heat.  Winters get cold, and some people can't afford the oil, or live in places with inadequate heat.

#20:  I'm thankful for the wonderful friends I've met online from RA support groups.  They make dealing with this dreadful disease so much easier! Thank you all!!!

#21: Thankful for the Internet and the ability to write this blog! I'm able to connect with others and reach out and help spread awareness of RA and other illnesses.

#22: Memories, yes I'm thankful for the good and the bad.  Without them, I don't think I'd be able to make some decisions in life. 

#23: Love.  Thankful for the ability to love and be loved.  It's such a wonderful feeling!

#24: Thankful for the wonderful change of seasons I am able to experience.  Even though some interfere with my health, I love seeing the changes in the earth, how beautiful it all appears. 
Fall tree, I took this!
#25:  Thankful for chocolate, boy is it yummy and makes me happy!

#26: Water, so thankful for that! Water is so important to keep our bodies hydrated and healthy.

#27: Baking!! I absolutely love to bake, and having the ability and means is awesome.  I love baking food for others to try, food makes everyone happy! ;)

#28: So thankful for music! Music is so soothing, calming and a great stress reliever.  Having a fiance who plays guitar, definitely helps in that aspect.  Music makes the soul happy.

#29: Thankful for my friends, who just make my life better by being in them.

#30:  And finally, I'm thankful for being able to just wake up everyday and enjoy life the best that I can.

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Friday, November 18, 2011

Secret to beautiful skin?

Winter is approaching, faster than I'd like to admit.  Here in New England, we had a snowstorm already! Many were without power for days, luckily I live close to the water so I barely got any snow.

The reason I bring up winter, is the icky dry skin!  The cold weather doesn't dry the skin out, it's the dry heat that does.  When I was younger, I had really great skin.  I never really suffered from acne, and could use any lotion and body wash out there.  A few years ago, my body decided to change all that and give me a hard time.  I was diagnosed with severe eczema, and started getting some acne on my T-zone.  I had to stop using all lotions, body washes, perfumes and laundry detergents, and had to use all "fragrance free"  materials instead.  Ever since, I still have trouble getting my skin right.  I still have smooth skin, but every once in a while I get breakouts of my eczema.  My skin becomes unbearably itchy and dry. I'm on a prescription, that is as thick as Vaseline and since it's a steroid, I can't use it that often.  I started to do research into more natural things I could to do to help me lessen the eczema flares.

A few things kept popping up over and over again, mostly the number one answer to beautiful smooth skin, was drink more water.  Okay, I already drink my 8+ glasses a day, I'm constantly running to the bathroom to pee, so I know I don't need anymore.  Then I kept seeing something else pop up... something for a while I just ignored thinking it sounded ridiculous, because it stated that could help clear dry skin and acne.  Until I had one of the worst eczema flares recently.

It was a Friday night, I was sitting at home and my scalp (which is one of the spots my eczema seems to affect me the worse), started itching like crazy.  I couldn't stop itching, it was getting to the point where I was making myself bleed.  I started freaking out, of course I checked my scalp for any signs of lice, just in case, but nothing.  So I went online and found that same thing that kept popping up and figured it probably wouldn't hurt to try. 

Olive Oil.

Yup.  Where it definitely seems it would help dry skin, but acne also?  I figured I'd try it.  First I warmed it up a little in the microwave, so when I put it on it would help open my pores and seem in.  I smothered it throughout my scalp then wrapped it in a towel.  I then dabbed a very thin layer on my face, and set a timer for 30 minutes.  After the time was up, I washed my hair in the shower, and rinsed my face.  The scalp was instantly cured of any itching, and my face felt smooth.  Normally throughout the day, my T-zone on my face gets oily... but after using the olive oil, my face felt smooth and oil-free all day.  I even woke up the next day to my skin still feeling not oily! I was amazed, especially because I didn't seem to get any reaction to it. I decided to try it out for a week and see what happens.

Before I get to how it has worked for me, let me explain why olive oil is so good for our skin, especially those who have sensitive skin!   Apparently using extra virgin olive oil for skin and hair care dates back to ancient Greece.  The reason why using this oil alone works so well is the antioxidants and vitamins it carries.  Olive oil contains Vitamins A and E, which "help repair and renew skin that has been damaged from overexposure to sun, air pollution, and other modern-day environmental hazards – like cigarette smoke and fast food." (Source: oliveoilsource.com)  These vitamins have the ability to naturally stimulate our bodies cells, resulting in firmer, smoother and healthier skin.

What's great is research has shown that all natural extra virgin olive oil works better than some of the most expensive skin care products out on the market.  In fact, some products use olive oil in them but charge outrageous amounts of money for it!  A 25 oz bottle of extra virgin olive oil cost me only $6 at Walmart.  Don't worry about brand name either, olive oil is olive oil so I bought the Great Value Walmart brand and still got amazing results.

Here are some ways to use olive oil in your everyday skin and hair regime.  These methods use plain extra virgin olive oil (EVOO). Some other research online has different "recipes" using lemon juice, Castor oil, almond oil, etc with it.  I've only used it alone, and seem to get great results.

Use as a Skin Moisturizer:
When used a a moisturizer, olive oil penetrates deep in the skin to provide smooth skin.  It is suggested to use as a night cream, putting it on before bed, since it does take longer than normal cream to absorb.  This is what I do, I rub some all over my face about an hour or so before bed, and then in the morning rinse off my face with warm water in the shower. Others suggest also using it when you're fresh out of the shower, just dabbing your skin dry so it's a little damp and the pores are open to best penetrate.  You only need a thin layer, since it does get greasy.  Also, make sure the oil has time to dry since it can damage some clothing materials.  This is another reason why it is suggested to be used at night. This has worked wonders for my eczema.  I usually put some on after getting out of the shower as stated, just dab it on areas where my skin gets dry, my skin is so smooth!  You can also add a few tablespoons to your bath to get an all over body moisturizer! I do this once a week and my skin is remarkably smooth! Just be careful because the tub may get slippery, especially when getting out.  I use a bit of Dawn dish soap when I'm done, and wash down the tub.

Used as a Facial Wash
Warm a little olive oil in the microwave for about 30 seconds (you don't want it hot!).  Dab a thin layer over your face and let it sit for 30 minutes or so (you can do less if you don't have time).  Sometimes I'll turn the shower on and shut the door to get the steam in the bathroom to open my pores.  I'll hop in the shower and wash my body, avoiding my face to let the oil penetrate before I rinse it off.  Or, you can wash your face with warm water (no soap), pat dry. My acne has cleared up, and haven't seen anything new.  My T-zone is no longer oily or shiny.  My skin feels soft, smooth and healthy!

Used as Hair Conditioner:
I suffer from dandruff and extremely dry scalp, so again this has worked for me! There are two different ways to use olive oil for the hair, as a dandruff control and for deep conditioning.  Once a week I dab some olive oil throughout my scalp, wrap my hair in a towel and let it sit for 30 minutes, then hop in the shower and wash normally. For deep conditioning, massage a mixture of equal amounts of olive oil and water into your hair. Leave on for 5 minutes, then shampoo and rinse. Your scalp will benefit from healthy conditioning; your hair will respond with more shine and strength.

Pros and Cons of using olive oil?
Pros: smooth skin, cleared acne, soft beautiful hair, no itchy skin or scalp
Cons: tough to rinse out of hair if you use too much, is a little greasy, takes a little while to dry.

You definitely need time to be able to use this method, so using it as a night regime seems to work best for people with busy lives since you can dabble it on your skin before bed, and wash off in the morning.  Some people use soap when washing it off, but when I tried this it dried my skin too much.  Every one's body is different, so try different experiments.  Some people claimed adding a little lemon juice to the facial wash helps clear up stubborn acne a lot.  If you do research, all different recipes of olive oil treatments pop up based on your individual needs.  I wish I could write about them all, but felt it would be best to write what I have experimented with and you can go from there.  I am very satisfied with using this, even after just two weeks.  It is said that the results are slow, it make take up to a month before you fully notice a difference.  I've noticed my acne has cleared, and my face feels smoother and not oily anymore.  Other than that the look of my skin is the same.  Hopefully after using it everyday for a month, my pores will be tighter and my skin will look better.  I was going to post a photo of my face, but it is still too soon to tell.  If after a month my skin looks different, I will post a photo! If you'd like to know my further progress, feel free to ask.  :) 

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Friday, November 4, 2011


Relaxation.... it's nice when one can find the time to actually relax and enjoy some "me" time once and a while.  Everyone has their own way of relaxing, whether it be to play or listen to music, workout, read, nap, cook...etc.  Everyone has something that relaxes them, and gives them time to just focus on that and nothing else. 

Relaxing is an important part of life, to help elevate our stress, which can really impact our lives.  Stress itself can cause many health problems, including depression, obesity, high blood pressure, skin problems and more!  Trying to find ways and the time to de-stress can be stressful in of itself, but it is vitally important.  Try to find some time to relax and enjoy time to yourself, even if it's for half hour a week, at least your giving yourself some time to get rid of that negative energy, and take in the positive. 

Personally, I have a few different activities that relax me, which I'm sure for most people there are more than one.  One of my favorite activities I do to relax is reading.  Getting lost in a book is relaxing, because you get involved in the story and forget about things in your life that are bothering you.  Let your imagination run wild while trying to imagine what the characters look like, what the scenery a certain chapter is taking place in, is just an awesome feeling.  I try to read as often as I can, my favorite genre to ready is fantasy and sci-fi, because I can really let my imagination run wild!  Another favorite activity of mine is baking.  Baking is relaxing because I can concentrate on what needs to be put into the recipe to make it turn out right... and of course, I get a yummy treat when I'm done!  My favorite food to bake is cupcakes, as many friends of mine will know.  I love being creative with not only what goes into the cupcake, but the decorations on the outside.  Again, I love using my imagination to relax me! 

Probably one of the weirdest things I do to relax is shower.  Not just washing my body clean, but I absolutely love to just sit in the tub with the shower head on me.  Not a bath, just the shower head.  There is something about it that is just so relaxing! I know it's probably bad, I'm wasting water....but it honestly feels so good.  I really have to be careful with baths because of my eczema, but the warm water not only feels good on my joints, but I can feel my whole body relax.  I just sit back and close my eyes and let my mind wander....sometimes I think of nothing, sometimes I think of all the things bothering me or worrying me.  There is just something about it, that calms me down.  I could sit there all day some days....ahh. Usually I do it every once and a great while, but I seem to be doing it more often.  I don't seem to have any more stress than normal lately, but it just feels so good.

Like I said before, relaxing is really important for our health.  I know people who lead busy lives find it impossible to do, but try.  When I was working, I'd read on my lunch break (while eating my lunch) to forget about work for a little while.  Sometimes if I could eat lunch at another time, or skip it, I'd go for a walk on my break.  Just a slow walk, alone to let my mind wander.  These are just some examples... it's important to find something that relaxes YOU, and of course finding the time to do so.  I wish you all luck, relaxing and stress-free lives! (I know with the holidays coming up, relaxation will be VERY important not to kill our families lol)

If you'd like to read a great article on how stress affects our everyday lives, and ways to help eliminating it, check out this website: http://www.womenshealth.gov/publications/our-publications/fact-sheet/stress-your-health.cfm#e

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Wednesday, November 2, 2011

Paroxysmal supraventricular tachycardia (PSVT)

A dear friend of mine has been having heart problems lately.  They started off about 9 years or so ago, and seemed to go away for a while.  Sadly, her symptoms have come back with a vengeance.  She had to wear a heart monitor for about two weeks, and then had surgery last week.  On top of it all, she has RA, Fibromyalgia, Periodic Fever Syndrome, Neutropenia, Raynauds, and Livedo Reticularis.  She's one of my very best friends, so I figured I'd write an informational blog about her heart condition. 

Normally, the chambers in the heart work together coordinately, contracting and expanding to push blood throughout the body.  They all work together like a team, knowing when to contract and when to expand at the right beat.  The heart knows this by an electrical signal that begins in the sinoatrial node in the heart.  Then the signal travels to the upper part of the heart, telling the atria to contract. (see diagram below)  Paroxysmal supraventricular tachycardia (PSVT)  can appear in any of those areas of the heart, when the signal isn't being properly sent.

This condition is seen mostly in younger people and infants.  Symptoms include: anxiety, chest tightness, palpitations, rapid heart beat, shortness of breath, fatigue & dizziness.  Symptoms can start and stop suddenly.  They can last anywhere from a few minutes, to a few hours. 

To diagnose this, a few tests are administered, including a normal physical.  The heart rate can run anywhere from 150 to 250 beats per minute (bpm), a normal bpm is 60 - 100, which can occur in between PSVT episodes.  These heart rates can occur sporadically, so the best way to diagnose is for the patient to wear a heart monitor from anywhere from 24 hours, to a week.  This helps the doctor monitor the hear rates, and to see if different everyday tasks seem to trigger the episodes, or if the rise and fall of the heart rate is random.

There aren't many treatments for this disease, sometimes treatment isn't necessary and symptoms go away on their own.  The type of treatment varies by condition.  Some people experience rapid heartbeat, slow heartbeat and a combination of both.  Depending on what the patient is experimenting, is what will determine treatment.

Emergency treatment include surgery called Electrical cardioversion, which is when use of an electric shock on the heart, sends the heart back to normal.  Medication can be given through a vein, such as adenosine, and verapamil.  Other medications that could possibly work are procainamide, beta-blockers, and propafenone. 

Long-term treatment includes: Daily medications of propafenone, flecainide, moricizine, sotalol, and amiodarone.  Pacemakers, which are used to override the fast heartbeat (this is more commonly used in children with PSVT who have not responded to any other treatment.)  And, Radiofrequency catheter ablation, which is the procedure my friend had and the number one treatment currently for PSVT. 

Here is an explanation of Radiofrequency catheter ablation taken from an article on uptodate.com written by Leonard I Ganz, MD. 
"Small catheters (special wires) will be threaded into the heart. The catheters are usually inserted into the vein or artery in the right and left groin (inner thigh) and are then positioned within the chambers of the heart using fluoroscopy (low energy x-rays). Occasionally, catheters are inserted via veins into the side of the neck, upper chest, or arm. The doctor will test various parts of the heart and usually will try to provoke the arrhythmia.
The sections of the heart that are causing your arrhythmia can be identified. The doctor will then use the radiofrequency energy (or cryoablation) to treat the problem area. During the procedure, your heart rate and rhythm, oxygen level, and blood pressure will be monitored.
When the procedure is completed, the doctor will again try to provoke the arrhythmia. If it cannot be induced, the procedure is considered to be a success. However, if the arrhythmia can still be induced, additional radiofrequency energy is delivered."

My friend won't know if surgery was a success, until two weeks after the surgery.  They did say they thought the surgery was a terrific success, but time will tell.  If you are experiencing any heart problems, it is vitally important to see your doctor or a heart specialist (cardiologist).  Our heart is one of our most important organs, so it is important to take care of it. 

Love your heart
and it will love you back.

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Tuesday, November 1, 2011

Ramblings & brownies?!

Ever have one of those days where you just feel totally out of it, and hours go by without you even realizing it?  Yea... that's me today.  I woke up at 10, got some breakfast and was sitting on the couch and looked at the clock and realize it was 1pm.  Don't remember eating my breakfast or what I did during that 3 hours, but my breakfast was eaten! Maybe I just have a lot on my mind lately, or maybe it's some side affect from some medication... who knows?! I figured I'd try to write down how I feel, maybe try to really write blogs more often.  Writing can be so therapeutic sometimes, just writing out how you feel, not caring who sees it.  I don't like to get too personal on here, because I really don't know who reads it, and frankly there are certain people who don't need to know all my business (not to sound rude).  People who are rude, or who plainly don't care about me, don't deserve to try to pry into my life.  I guess I'm just feeling confused and hurt by certian things that have gone on in my life, things you try to forget but creep up on you when you least expect it. Sorry for the rambling, like I said, odd mood today.

Anyways... a little update for you all.  I had to see the lovely OBGYN last week, totally favorite appointments, right ladies?  Hah.  Well my doctor is pretty rad, she was sweet and totally made me feel comfortable!  I've been having severe cramps for months now... it started as a kid, I was diagnosed with the cramping disorder Dysmenhorrea.  Over the past few months, the cramps keep getting worse and worse.  Had some of the normal tests done, and am scheduled for an ultrasound next week to get a good look inside.  For now, I'm not taking the "sugar pills" so I'm only getting my period every 3 months! Woo! I guess that helps with cramping, and has no complications in the future when I want to be a mom.  More waiting, but at least I am getting some answers.  Of course I had to finish out this pack of pills and my Aunt Flow came for a visit starting yesterday.... so today I feel like absolute crap.  Cramps are awful, no pain medicine seems to touch it.  Spending my day on the couch with a good book, and eating my leftover Halloween brownies! (see photo below) What cravings do you have during this time?  I always crave something chocolate.... mostly I eat oreos or brownies, my two favs!


Well that's my day... and to work on some more interesting blogs coming up! Sorry for the rambling, and the random blog.  :)