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!

Tuesday, December 20, 2011

Actemra

A while ago I did a series of medicine blogs, all of which were medicines that I had tried in the past.  I've seen a few people asking about information about other medicines, and are having trouble finding information on search engines.  So, I've decided to do a few more medicine blogs about those I have left out.  Hope these help you all who have had some trouble finding information! 

Medicine Blog #7: Actemra

As I said, I've never taken Actemra before so I have no personal information about it.  I have done extensive research and compiled all that I could find here for you, to hopefully help those who are wondering about it.  There isn't a lot of information out there, because Actemra is a very new medicine on the market.  It was approved by the FDA on January 11, 2010 and on April 15, 2011 it was approved by the FDA to be taken in combination with Methotrexate. 

First, What is Acetmra, and how exactly does it work?  This was taken directly from Acetmra's website: ACTEMRA works by being specifically designed to block the action of the IL-6 messenger cytokine, and is the only medicine to do so. Cytokines send signals to white blood cells to fight germs and viruses. Unfortunately, people with RA have too many cytokines in their body, including IL-6. The white blood cells then work too hard and attack the body, resulting in the signs and symptoms of RA.

So Actemra works by getting rid of the extra cytokines, unlike Enbrel and Humira which block TNF (tumor-necrosis factor - the substance that creates inflammation) or Methotrexate which blocks white blood cells from growing too quickly (please view my other medicine blogs for more information).  It is usually given after any of these, or other medications have not worked. 

A study was done with patients who suffer from severe Rheumatoid Arthritis.  Some were given 8mg/kg and others were given 4mg/kg every 4 weeks.  59% of those who took the 8mg/kg and 48% of those who took the 4mg/kg showed 20% improvement in a number of swollen and tender joints and the CRP number was lowered after 24 weeks.  Another study was done on patients who took Actemra in combination with Methotrexate.  Those results showed that patients who were on 8mg/kg of Actemra plus Methotrexate: 56% showed 20% improvement, 36% showed 50% improvement and 20% showed 70% improvement after 52 weeks (1 year). 

How is Actemra given?  It is given intravenously (IV) by a nurse or doctor in a medical office or hospital.  The medicine takes about 1 hour to receive, and is usually given once every 4 weeks. The doasge is either 4mg/kg or 8mg/kg, depending on the severity and what other medications the patients are on.   

It is important to discuss all current medications (including supplements) with your doctor before starting Actemra, as some medications may interact with it.  Some of those medications include: blood thinners, aspirin or other NSAIDs (ibuprofen like Advil or Motrin), naproxen, some cholesterol-lowering medications, and oral contraceptives.  This isn't an entire listing, so please make sure you have a full list if everything you are currently taking for medications!

What side effects can occur with Actemra?  Side effects may include, but are not limited to:  headaches, runny nose and/or sneezing that don't go away, hives, itching, swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing, dizziness or fainting, change in bowl movements/habits, unusual bleeding or bruising. 
As I said, these are not all possible side effects, and it is important to contact your doctor with any sign of something going on. 

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Friday, December 16, 2011

Bitterness....

Feeling a bit bitter about my illnesses today...I'm just so sick of being stressed out all the time about what medications I have to take, what foods to eat, and which foods to avoid... Also, I see others complain about small, mundane stresses in their life. To them it's a big deal, and a lot of stress on them, to me it's small in comparison to what me, and others like me, have to deal with on a daily basis. I WISH I only had to stress and worry about "normal" things.... So let's step into the mind of what it feels like everyday to live with chronic illnesses....

First, I've been on and off a steroid known as prednisone for about 22 years. While it works great in lowering inflammation, it has caused me so many other problems! First it caused glaucoma and cataract in my left eye when I was 8 (I already had Uveitis when I was 3). The cataract has since been removed, but the medicines used to treat the Glaucoma, make the Uveitis flare, and the medicines used for the Uveitis make the pressure in my eye go up from the Glaucoma! They both counteract each other and I have to constantly be seen by an eye doctor to make sure it's well controlled. I've had 5 glaucoma surgeries over the years because the Uveitis flared and I had to increase the medication. Every time I get even a headache in my eye, I have to be seen by my doctor to make sure it's not the Glaucoma or else my vision will go away forever. My left eye already looks funky because of the vision loss I've had, and makes me so self conscious, I'm constantly worrying about how it looks. It makes me feel ugly, and I hate it.

Then the prednisone caused bone loss in my neck and hip, known as Osteopenia. I have to make sure I am taking Calcium with Vitamin D supplements twice a day, and making sure I am eating foods that contain those supplements (milk, yogurt, broccoli, etc). However, I also have Irritable Bowl Syndrome and have to watch what I eat or else I will end up in severe pain. Foods I am told to avoid are caffeine, fiber and what else, but dairy! Again two things that counteract each other! So do I eat the dairy so my bones don't loose anymore density and I end up brittle? And in doing so end up hurting my stomach? Or vice versa?! Something I have to think about every time I go eat something.

Then, the medications that I've taken over the years for my Rheumatoid Arthritis are known as immunosuppressants, which lower my overactive immune system. Because I've been on so many of them since I was 3, my antibodies known as IgA are completely wiped out and I can never get them back. My body has actually built up a resistance to them, so if I ever needed a blood transfusion and the IgAs were in it, I'd go into anaphaltic shock (medical alert bracelet is worn for this!) So now I have to give myself an IV of some antibodies known as IgG and have to be extremely careful with germs. I can't be around people who are sick, and when going out in public, I have to constantly watch what I touch and wash my hands all the time! If and when I do get sick, I have to immediately contact my Immunologist so I can be put on a special antibiotic and be monitored by him. If I am sick too long, I have to switch to another antibiotic, and other possible means of treatment may be needed.

I'm also on a chemotherapy drug known as Methotrexate. Yes, it is CHEMO, but not as high a dose as cancer patients need. It still makes my hair fall out, and I have to take a vitamin weekly to help decrease the loss. If I forget to take it (since it's only 1x a week, and has to be taken 12 hours after the methotrexate, I do sometimes forget), my hair falls out so bad, that after one shower, my drain is covered in hair. My hair is thinned from it, and again makes me feel self-conscious about the way I look, and am constantly worried about wearing my hair certain ways.

To be normally healthy, you're supposed to eat right, drink lots of water and exercise. Which I try to do all three. However certain healthy foods like fruit and vegetables, I have to be careful of eating too much because fiber can upset my stomach. Exercise I can't do if my RA is flaring, and when I do exercise, I'm always in so much pain afterwards I have to pace myself and wait days between or I'll put myself into a flare! Exercise also completely exhausts me, fatigue is another symptom from my illnesses. I would like to be able to work out and look and feel good about myself, but how am I supposed to with all this crap?! I try as often as I can, believe me I do try.

There is obviously more, I didn't even cover all of my illnesses, but these are my daily worries. These are things I have to constantly think about, and take over my life. Sorry to have just rambled on, but apparently I needed to get it off my chest. Add to it me being out of work, and having to worry about normal, everyday things like paying bills, buying food and medicines, family drama, my looks, worrying about the people I care about, Christmas shopping!, etc. It's enough to make you want to rip your hair out! Yes, I have my days where I want to scream WHY ME?! But I don't, because I know things could be a lot worse off, and everyone should stop and think about that as well. Stop stressing and worrying over the stupidest things, and be thankful for what you DO have. Sometimes it is hard to see it that way, but try as often as you can. Otherwise, you'll be a miserable old grump forever.

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Wednesday, December 14, 2011

Let's add some moisture to the air!

When winter hits, do you regret turning your heat on because it's so drying you get chapped lips, and itchy dry skin?! This blog will be a little different, I won't be discussing medicines or illnesses, but ways to add moisture back into the air of your house/apartment.  Dry heat is awful, and my apartment heating system is the worst! I always have very chapped lips and dry itchy skin.  My eczema doesn't help matters, but I was sick of freezing my buns off to avoid using the heat.  Humidifiers are obviously the best way to add moisture, but they're so expensive and since I don't have the extra cash, I did some research into ways I could save myself some money.  Here are some helpful tips to add moisture back to the air, naturally!

Fill a crock pot with water, and keep on, with the lid off, for the day!  To add something fun, I add spices to make it a potpourri as well.  I sometimes add nutmeg, cinnamon sticks, and vanilla.  Also orange or apple peels.  It doubles as adding moisture to your house and makes it smell good!! :)  You can also do this with a pot on the stove, but the water tends to boil away real fast. 

When it's real dry, I'll put bowls around the house, and boil water and fill them up.  The steam makes the water evaporate faster and get the air nice a humid.  Some people use clear bowls, and buy candles or decorative flowers to make them more appealing to guests. 

If you wide enough radiators or base boards, you can always place a bowl or pot of water on top, so when the water heats up, the water will evaporate into the air. Water doesn't need to be boiled to evaporate!

Drying your clothes indoors can help.  Hang wet clothes or towels, especially some items that can't be dried, around your house!  Hang them on coat hangers on doorways, shower curtain rods, or on the back of chairs.  If you'd like, dry all your clothes this way and save money on electricity by not using the dryer.

Houseplants are an excellent way to fight dry heat!  Plants naturally add moisture to the air themselves, so keeping them well watered will especially help.  The more plants you have, the more moisture! So buy some nice greens! :)

When you cook on the stove, leave the lids off! 

Leave a pot full of water on the stove (burners off), while baking something in the oven.  The top of the oven tends to warm up enough to heat the pot.

Take a shower with the door open! Not only will this help spread the moisture through the house, but it can also help prevent mold and mildew.

If you own, or ever wanted to own, a fish tank, that is an excellent and decorative way to beat the dry heat!

When it rains, leave the windows open a crack.

Open your dishwasher to dry dishes. The steam from the dishwasher will be released into the air improving the percentage of humidity in your house

It's always important to monitor the level of moisture you're putting into the air.  Too much can cause mold and mildew to form.  It's best to not try ALL of these methods at once, but maybe one or two, so you can balance the levels evenly.

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Tuesday, December 6, 2011

Benefits of Fish Oil

It's well known that fish oil is very healthy for us, and is recommended by so many doctors.  I try to eat fish once a week, and figured that was enough.  Nope, you should have fish oil everyday!  In fact most doctors recommend taking at least 3 fish oil pills a day!  I decided to buy some pills for myself, after discussing it with my doctor, and have started taking them three times a day as instructed.  So why is fish oil so good for us?

First off, fish oil is taken from the tissues of oily fish.  It is not taken from one particular organ either, but taken from several and a fish oil capsule may contain oils from several different types of fish.  Fish oil contains something known as Omega-3 fatty acids -GOOD fat, yup you read that correctly.  It has well known health benefits, including reducing inflammation.  The type of fish include: mackerel, rainbow trout, lake trout, halibut, herring, sea bass, sardines, swordfish, oysters, albacore tuna, blue fin tuna, yellow fin tuna, turbot, pilchards, anchovies and salmon.  What's interesting is, fish don't actually produce Omega-3 fatty acids, but it is in the foods they eat, like other fish, or sea plants. 

What are the benefits of taking fish oil?

Heart Health: The American Heart Association has done several studies, and has proven that fish oil can help decrease the incidence of cardiovascular disease.  It works well to decrease bad cholesterol, and also helps increase the good cholesterol!  Fish oil also works well to help prevent clogged arteries, which in turn helps prevents heart attacks and strokes.

Weight Loss: Research has shown that with a healthy diet and regular exercise along with fish oil, it can help you loose weight faster, than those two alone. 

Immunity:  Research has also shown that fish oil, taken over time, can help build up your immune system and help prevent more colds and flu's from occurring.  It is also very beneficial to patients suffering from lupus and aid in reducing the pain and inflammation that may occur in joints, eyes, kidney, heart, blood vessels, lungs, nerves, etc.

Inflammation:  Fish oil has been proven to help reduce inflammation all over the body, including our  joints and lungs.  It is great for inflammation diseases such as Rheumatoid Arthritis, Asthma, and Crohn's disease! This is a well known supplement suggested to be taken by every rheumatologist I've encountered.

Depression and Anxiety: It is good for relieving depression, sadness, anxiety, restlessness, mental fatigue, stress, decreased sexual desire, suicidal tendencies and other nervous disorders. There has also been successful research that fish oil is great for helping treat bipolar disorders.

Alzheimer’s Disease: The Alzheimer's association recommends fish containing higher content of omega three fatty acids to patients as it acts as a protective diet during Alzheimer disease and dementia.  Fish oil is usually prescribed in aiding with the treatment of this disease.

ADHD or ADD:  Studies have been conducted that when children suffering from ADHD were given doses of fish oil and evening primrose capsules for 15 weeks, they showed significant improvement. Since our brain consists of about 60% of fats, especially essential fatty acids such as omega 3 and omega 6, fish oil helps in improving the functioning of the brain  It is also believed that fish oil is useful in the normal development of the brain.  Fish oil has also been proven that when pregnant women are given regular doses of this, the children show better hand eye coordination. 

Skin Care: Fish oil can help with those who suffer from dry skin and skin disorders such as eczema and psoriasis.  It is known to help reduce the loss of moisture from you skin, and also give you a soft glow to your skin.   It has also been shown that fish oil can help decrease acne!

Hair Care:  Want more healthy looking shiny hair?  Fish oil can help make your hair more healthy, and helps prevent hair loss.  It also can aid in helping your hair grow faster.

These are just some of the benefits of taking fish oil!  Amazing how it can help us in so many ways.  Are there risks in taking fish oil pills?  Of course!  So what are the risks? The risks below are usually an indicator of taking too much fish oil.  If you're a fish eater, decrease the amount of pills you take the day you're eating the fish to help prevent any side affects from occurring. This isn't a list of all possible risk, but just the most common.
 

- Thinning of the blood and reduced ability of the blood to clot, increased risk of hemorrhagic stroke.
Warning: Fish oil shouldn't be taken with blood thinning medication - warfarin or aspirin for example. It shouldn't be taken by anyone with bleeding disorders or uncontrolled hypertension. If you are taking any medication please check with your doctor before supplementing your diet with fish oil.
- Increased cholesterol in people with combined hyperlipidemia.
- Large doses* may suppress the immune system
- Large doses* can increase glucose levels in people with diabetes.
- Increased bleeding, nosebleeds, easy bruising.
- Upset stomach or intestines, nausea, diarrhoea, belching.
- Fishy odour.

*Large dose is 3000 mg of Omega-3 per day.  This is NOT 3000mg of Fish Oil, but of the Omega-3. Recommended dose of Fish Oil is is 3-4 capsules per day. Anything over this amount, is considered too much. 
As always I am NOT a medical professional, and starting ANY kind of medication, even a natural supplement should be discussed with a doctor before starting.  It is suggested to start off slow with the capsules, taking 1 a day for a few days, then increasing as time goes on.  This may help prevent any side effects from occurring.

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Friday, December 2, 2011

Medical Update

For the past year or so, I've been experiencing severe upper back pain.  I ignored it for so long because I am so sick of new symptoms and illnesses popping up, and seeing so many doctors.  My fiance, Adam kept suggesting that I call, he was concerned because no matter how much he massaged by back, the pain just kept getting worse. It was getting to the point where my actual bones were so sore, I was woken up during the night from the pain being so bad, I was in tears.  I finally took Adam's advice, and called a chiropractor.

After doing research, I found one within walking distance from my apartment (about 1/4 a mile), and he received all 5 star reviews from his patients! I didn't see a single review below 5 stars, so I knew this would be the one I should call.  I called this past Tuesday, and was able to get in and be seen THAT afternoon! Wow!  He did a physical exam, asked a lot of questions and then sent me for X-rays so he could see what was going on in there.  I was able to go back yesterday (Thursday) to get the results!  I found out that I have mild scoliosis in my mid and lower back.  He said this could also be causing my severe menstrual cramps I've been having, since my back is out of alignment, it could be causing strain on the pelvic muscles that cause cramping. 

We then discussed treatment options, including exercise, diet and treatments performed in the office.  He will be giving me adjustments, and have to use something called The Spinalator table, which is a table I lie down on my back on, that contains chiropractic rollers that go up and down my entire spine.  According to Access Equipment Corp, “the rollers lift and separate each segment of the spine. The rollers also elevate to increase the level of pressure applied to the back. The rollers are then moved up and down the spine by a travel system."  He did both that day, and said I'd need to come in three (3) times a week for treatment.  Normal, healthy people take about 4-8 weeks to fully heal, but with my illnesses and immuno-suppressant medicines, I could take as long as 8-12 weeks. 

Both the adjustment and table didn't hurt, and felt really great.  I go again tomorrow, and hope this is able to help my pains.  I am also going to look into starting some yoga, as I know this will help not only my back, but my RA as well.  I found a DVD that is called "Yoga for Arthritis", and is gentle on my joints, as normal yoga I can not do, it hurts too much.  It may be a long while before I feel some relief, but I feel better now that I have some answers and a plan of action!

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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

Relaxtion....

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.  :)

Monday, October 31, 2011

Award!

Wow, I just found out I was awarded the Versatile Blogger Award from Parga's Junkyard!! Thanks so much to everyone who reads my blog! I am definitely honored and am so glad to hear many people enjoy reading them.

About the Versatile Blogger Award:
1. Thank and Link back to the person that gave it to you!
2. Share 7 things about yourself.
3. Send the Versatile Blogger Award on to 15 other bloggers and let them know you have awarded them!


So, 7 things about myself are:

1. My favorite past time is reading, I love getting lost in a book for hours on end.

2. I absolutely love to bake, especially cupcakes.  I like to be creative and use different things to decorate and make them unique.

3. My favorite comfort food is brownies.  Yummmmmmm!

4. My favorite holiday is Thanksgiving! Fall is my favorite time of year, and I love getting together with family without the hassle of presents. Christmas has just seemed to get too materialistic these days.

5.  My favorite clothing is jeans, a tee shirt & a comfy pair of sneakers.  I hate wearing heels, a) because of my RA and b) because I'm pretty clumsy.  I always say that when I get married, I'm wearing a long dress with sneakers underneath.  I'd be the one to trip and fall on my face down the aisle.

6.  I own two cats, whom I absolutely love and adore.  They bring me comfort and relax me when I'm stressed.

7.  I'm engaged to the love of my life, Adam - and we've apparently been running into each other since we were four.  Weird connections and such that make me further believe we have always been meant for each other.  May sound corny, but it's true.


And now, to award other bloggers who deserve this award!





5. MaryK 






Friday, October 21, 2011

Bad blogger!

I've been a bad blogger.... and I apologize.  Life gets busy sometimes, and illnesses sometimes take over our lives, no matter how much we try not to let it.  Just been feeling down and out of sorts lately.  So sorry about that.  I'll do an update on what is going on!

I went through a bad spout of horrible fatigue.  Tried everything I could to help it, and nothing worked. I saw my Rheumatologist a few weeks ago... I believe it was September 28th.  He ran blood tests and nothing showed up for the fatigue, said it's probably from the Methotrexate and Humira that I'm on.  Joints looked fantastic! Yay! 

I've also been experiencing horrible cramps.  I was diagnosed with IBS back in June, but this is period cramps.  They start two weeks before my period and last through most of the dreadful week. I was diagnosed with dysmenorrhea (cramping disorder) back when I was 12 years old, and have taken birth control effectively ever since.  For the past two years, the pains have gotten progressively worse, even with hormone changes to my birth control.  I see an OBGYN next week - primary care doctor suspects endometriosis.  I'll have to wait and see what happens. 

I have some ideas on upcoming blogs, so I should get back into the swing of things soon!  :)

Friday, September 16, 2011

Exersise for our bones

First off, I want to apologize for not writing in so long, I've been a bad blogger!  Life has just been beyond busy for me.  For those who may not know, I've been trying to start my own photography business.  It's been a slow start, but is finally looking up.  I participated in my first Art Show last week, and I am almost fully booked for appointments in September and October, so busy, busy!!  Thankfully, I've been feeling pretty good for the most part.  I've been having some bad fatigue and lots of bruising lately, I see my rheumatologist next week.  I actually have 2 doctor's appointments Wednesday, one the following Tuesday and one the following Friday.  I will definitely write an update blog after the appointments are done. 

Now, onto the blog! Today's blog will be about exercise for our bones! I was diagnosed with Osteopenia back in June.  Osteopenia is a type of bone loss, less severe than Osteoporosis, but if not taken care of early will eventually lead to Osteoporosis.  For those diagnosed with one or the other, or those who are at risk of bone loss, need to take care of their bones, starting young is the best for the long run. Food is important to our bones, a diet rich in vitamin D and calcium is vital.  Foods with calcium and/or vitamin D include: Milk, yogurt, cheese, broccoli, etc.  Or there are calcium with vitamin D supplements, but always speak with a doctor before starting any new supplement. 

My bone doctor said that besides a healthy diet with lots of calcium and vitamin D, weight-bearing exercise is also very important for bone health.  Weight bearing exercise does not mean lifting weights, it's any activity done on your feet and legs that work the muscles and bones against gravity, such as walking, jogging, hiking, dancing, step aerobics, soccer, basketball, stair climbing, etc.  Exercises that are NOT weight bearing are cycling and swimming.  For those who have RA like me, you probably just cringed reading that list!  However, I have found a fun workout that doctor approved!

Any gaming system now a days have motion control games, including the Wii!  The Wii has a bunch of different games that gets you up and moving.  Last Christmas I received the Michael Jackson Dance game, and started using it as an almost workout routine.  Days I felt good, I got up and danced for as long as my body could take it.  I was sweating up a storm, getting my heart-rate up, and felt like I wasn't moving much at all! I mentioned this to my doctor and she said "I've never use the Wii, but have heard so much wonderful things about it.  If you're on your feet moving around, then that's a great weight-bearing workout!"  The Wii also features sports like bowling, baseball, Frisbee and more!  If you do these on your feet and move around, when you feel well, you'll be working your muscles and bones to help not only your bones but your joints to keep moving as well!  I know that sometimes it's difficult for us to even get out of bed most days, so you probably think I'm crazy for suggesting this, but after playing the dance game, it gives me energy and I feel a lot better.  Days I really can't stand on my feet, I use my stationary bike.  While it's not weight bearing, it's helping to keep my joints moving, and help build up the muscles in my thighs so maybe I will be able to stand up and dance a little longer. 

Keeping our bones healthy and happy is important for our lives, especially long-term.  As I said before, diet alone isn't enough, some type of exercise is also important.  Everyone is different, so finding the right exercise for you is also important.  If you're unsure what to do, speak with your doctor and I'm sure there's a way to come up with something that will be beneficial for you. 

Good luck!

Tuesday, August 16, 2011

Medical Update

Hello!! I will get back in the swing of writing medical blogs soon, it's time to update everyone on what's going on! I saw my rheumatologist on Wednesday August 3rd, and made out really well.  I've been on the Mehtotrexate injections since late March, and Humira for about 7 years.  It takes months for medications to work to their fullest extent, so being patient is important with RAers!!  For the past 3 weeks, including when I was away, I've been feeling really good RA wise.  I've had no swelling, just a few days of a little stiffness that went away easily.  My doctor was happy with my progress and how I've been feeling, and we both agreed to stay on this same regime for another 6 months or more to better see if it's actually working. I see him again in two months (hopefully not sooner) to see how I'm feeling.

 I'm happy with the way I've been feeling, I just don't want to get my hopes up yet.  It'd be nice to have found "the one" medication combination that works for me.  After dealing with this for about 23 years, it's nice to feel somewhat normal.  Time will tell, and as I said, I need to be patient and see.

I lost more weight over the vacation... I'm down to 14lbs lost and weigh 105lbs... not from diet or exercise but from my stomach issues that are still occurring.  I had my Endoscopy on Monday August 8th.  Yesterday my gastro doctor called and said everything looks good, so it appears I have IBS (Irritable Bowl Syndrome) that is treated by diet.  From all the research I've done online, it seems going "Gluten Free" is the way to be! Those with IBS who went gluten free saw great improvements with little to no symptoms.  It'll be tough, but I am going to go for it.  If it will help, it's the best thing I can do for me.  The pain I experience is horrendous, so it will be nice to not have to live with it anymore.  I did a blog a while ago on gluten free, so if you'd like more information about it, be sure to ask. 

Tuesday, August 2, 2011

Vacation!

Brenna & I in Maryland! :)
Hello! I'm back from a wonderful two week vacation!  My fiance, Adam and I took a roadtrip to Maryland, Tennessee and Virgina.  Our first stop was to visit my dear RA friend Brenna in Maryland.  She lives on a huge, beautiful farm with her family.  We had such a fun time, her and her family took us to some great touristy stops like Ocean City, Rehoboth (Delaware), Assateague Island and Salisbury. 

Adam and I love to do paranormal investigations, so one of the first days there, Brenna and her oldest brother Josh took us through the woods to this old abandoned graveyard.  It held a family of five that had passed away in the late 1800s from some sort of disease (like influenza or something of the sort).  We didn't find anything, but it was still a lot of fun! Later in the week we did another paranormal investigation with Brenna's other brother Mat and his wife Heather at another larger graveyard.  :)

Ocean City is right on the water, with a huge boardwalk that has a small amusement park, arcades, shopping, restaurants and a beach.  I loved this area! The photo of Brenna and I above, is us at Ocean City in front of the Ripley's Museum.  We didn't go to the museum though, they were charging $30 a person!! I thought that was outrageous.  While there we stopped at an arcade, which had Adam's favorite arcade game, Terminator!  We had some lunch at a pizza shop, stopped at the amusement park and rode some rides (my favorite was the pirate ride, I'm a big pirate fan). Last we stopped in a souvenir shop where I bought a pirate mug that says "Pirate Rum" and looks like an old beer stein, a pirate shot glass and a postcard.  Assateague Island was another beautiful beach that had wild ponies all over it! When we first arrived we saw absolutely no ponies, just lost of pony poop lol!  We decided to go to the beach and got some sun for a couple of hours.  Dark clouds started to roll in and it started to rain and thunder, but Brenna was determined to show me some ponies! Ha ha!  I guess the rain brought them out, because we ended up seeing a bunch!  I got some great shots of them, but was afraid to get too close as they are wild.  Below is a photo of some of the ponies we saw on the side of the road.  :)
Ponies at Assateague Island
Another day we went to Rehoboth, Delaware which is a great touristy town that had lots of shops and restaurants including Dogfish Head which is a famous brewery.  We didn't go to the actual Ale House since it was 3 hours away, but went to the restaurant.  The food was good, but the beer was even better!  Great place!  We did some shopping and I found a new purse that I absolutely love!  I took some great photos there also, I probably won't be able to fit all the photos on here but will try to create a slideshow or something. :)

Other days, Brenna and I just stayed in, relaxed and had some girl time.  She has two older brothers and Adam got along with them great so he spent a lot of time hanging out with them.  We painted each other's nails, played some Nintendo games from our childhood, did some fun modeling photos or just hung out.  It's always good to have downtime on a vacation so you don't get worn out.  Thankfully during this week, my RA seemed quiet and I felt great for the most part! I'm so happy my body was cooperating during this time.   Brenna and I had a girls day out one day and she took me to a place called Ross, which is like a TJMaxx, I loved it so much we were there for almost three hours and didn't even realize it, ha ha! I bought a new dress and some shirts for cheap money!  I was happy. :) We then had lunch at a Mexican Restaurant which was yummy, and then stopped at a few other shops. 

Adam & I in Rehoboth!
The week was definitely fun-filled, and it was sad leave.  I loved meeting Brenna's family, they're so nice!  I wish we lived closer so I could see her more often, but maybe it just makes our friendship that more special.  It's nice having a friend with RA, so we can understand each other when we don't feel well or are not up to going out everyday.  Sometimes it's nice to just stay in and enjoy each other's company.  I had a wonderful time and miss Brenna already!

We stayed in Maryland for an entire week, and left Saturday morning to head to Tennessee where Adam's dad now lives.  It took us a lot longer than expected to arrive - it seemed to be the day of mishaps for us! First, after driving for about two and a half hours, we stopped at a Dunkin' Donuts so I could buy a coffee.  Adam went to pay and realized his wallet was missing.  I payed and then we pulled over to search the car, where it was nowhere to be found.  We called Brenna and after a while she found it in her house! Phew!  Then we seemed to hit traffic everywhere we went, so it set us back a lot.  My RA started to bother me during this ride, my right knee kept getting really stiff and achy so we had to stop every so often so I could get out and walk around. What was supposed to be a 7 hour drive, ended up being almost 12 hours! Ugh. When we finally arrived in TN, we were exhausted and just crashed for the night.  The next day was just spent relaxing and recovering from the long trip.

Adam with a huge Roman Candle - he's a nut! lol
In Massachusetts where I live, fireworks are illegal, since they're legal in TN, we always buy some and light some off for the fun of it.  So of course, that was one of our first stops while down here, ha ha.  Adam loves lighting off the fire works, I love watching and taking lots of photos!  I took tons of photos, here's one to the right of Adam lighting off a Roman Candle.  He's brave and a nut for doing this, but he loves it!   One day Adam and I took a trip to Sevierville, TN where we made two stops.  First was to Smokey Mountain Knife Works, which is a huge store that has knives, swords, gifts and more.  They also have replica swords and knives hanging on the walls and in display cases from movies such as Lord of the Rings, Batman, Rambo, Pirates of the Caribbean, Zelda, and many more! We've been here before, but it's always fun to come back and see what's new in the collectibles.  I was stoked because I found three old Teenage Mutant Ninja Turtles comics here for only $3 a piece! I've loved the TMNT since I was a kid and am trying to get some of the original comics.  These weren't the first original ones, but still some from the 80s, so I know I'll love reading them. :)  

Smokey Mountian Knife Works
Next stop we made was to the Scrapbook Superstore, my favorite place!  Scrap booking is a favorite hobby of mine and here in Mass, there are no stores like this so I always try and go while we're here.  They actually have two stores, one is the main one that is huge, and another smaller one is their discount store where everything is 50% off retail price and they always have another sale going on.  This time stickers were buy one, get one free.  I bought some supplies that I needed and was happy with what I found.  I ran out of pages so I haven't been able to do scrapbooking for months!  Now, I'll be able to get back into it and be able to finish the book I was working on, and hopefully start on the next one.  They're so fun to make!
 
Most of this trip was spent relaxing and not going out too much.  My RA still was doing really well and keeping quiet, but my stomach started acting up real bad.  I've lost more weight, and am due to have my endoscopy next week.  Hopefully I will have some answers soon, my clothes are all too big for me and I can't afford a new wardrobe!  We stayed in Tennssee for a week, and left the following Saturday morning.  We decided to make a stop in Virgina to see the Luray caverns.  Everytime we go down to visit Adam's dad, we always pass signs that promote the caverns.  I've heard they were beautiful, so we decided to stop and see.  They were beautiful and I got so many photos! However, we went on a busy, busy day! There was a tour bus that arrived just ahead of us so we had to wait in line for a little while.  It just amazes me how beautiful our earth is, and makes me appreciate it even more.  I know it's just rocks that form into these formations, but it's still amazing to think they are made naturally this way. 

Me at the Luray Caverns, VA
The walk through the caves was long, but still I felt great!  I'm really hoping  that the Methotrexate and Humira combination is the medicine choice for me.  I can't remember ever being able to do this much in two weeks time and still come out feeling, well.....almost normal.  I still don't want to get my hopes up, because everytime I start to feel great I either have a bad reaction or it just stops working.  I see my rheumatoligist tomorrow morning and will update you all on how I make out.  Overall, I had a fantastic two weeks and am so glad I was able to get away for a while. Two weeks was a long time though.  I have two kitties at home and I missed them and my dear friends and family a lot!  Towards the end I couldn't wait to come home and see them, I guess I was getting a bit homesick.  You never appreciate your home until you're away from it so long. 

Thanks to my readers who always read my blogs, I will get back on and try to do weekley blog updates again! As always, anything you'd like to see in future blogs, please feel free to leave it in a comment here or on my facebook page.  If you need the link, you can find it: HERE

Tuesday, July 12, 2011

Humira

Medicine blog #6: Humira

This will be the last in the series of medicine blogs for now.  I am also going away on vacation for two weeks, so there will be no blogs in that time.  I will be full ideas when I get back though!  Today's blog is about Humira, which is what I'm currently on.  I've been on Humira for about 7 years now, and I take it every week, which is rare, most people take it every other week.  Over the years I've been on it alone and with other medications.  I'm currently also taking Methotrexate, which was the first medicine blog I wrote.  Humira seems to work well with no reaction, but it can't work alone.  We've had a tough time finding the right combination - sometimes one combination will work for a little while, then I'll either have a bad reaction or flare up.  So far, after 10 months of slowly increasing the Methotrexate and then switching from pills to injections, I seem to be doing well.  I won't get my hopes up yet though, because you never know what can happen.  The only thing I don't like about Humira is the sting! When you inject, it stings real bad.  Even after the 7 years it still bothers me.   Let's take a closer look at Humira.

Humira is an injection that is in a class of medications known as tumor necrosis factor (TNF) inhibitors. It works by blocking the action of TNF, a substance in the body that causes inflammation.  It is used to help treat the symptoms of auto-immune diseases such as rheumatoid arthritis, crohn's disease, ankylosing spondylitis, psoriatic arthritis. 

Humira comes in a solution that is injected under the skin (subcutaneously), in either a pre-filled syringe or pen (see photo to the right).  The pen is an automatic dispenser of medication, and some people find it easier than actually injecting.  I've used the pen in the past when it first came out, but personally I prefer the injection.  The pen dispenses the medicine for you quickly and accurately, but I like to be in control of how fast or slow the medication goes in me.  It is normally injected every other week, but can vary by condition.    Humira can be injected anywhere on the front of your thighs or stomach except your belly button (navel) and the area 2 inches around it.  To prevent any bruising, redness or soreness, you should try to use a different site each time you inject.  It is also important to inject at least 1 inch away from a spot that you have already used.  Never inject into an area where the skin is tender, bruised, red, or hard or where you have scars or stretch marks. 

Common side effects that occur with Humira are: redness, itching, bruising, pain, or swelling in the place you injected Humira injection, stomach pain, nausea, headache, back pain.  I tend to get redness and bruising sometimes with my injections, and the medicine stings sometimes also.  If I take the Humira out of the fridge for about 20-30 minutes before injecting, it tends to help eliminate the sting  a bit.  More serious side effects are: numbness or tingling, problems with vision, weakness in legs, chest pain, shortness of breath, rash, especially a rash on the cheeks or arms that is sensitive to sunlight, new joint pain, hives, itching, swelling of the face, feet, ankles, or lower legs, difficulty breathing or swallowing, fever, sore throat, chills, and other signs of infection, unusual bruising or bleeding, pale skin, dizziness, red, scaly patches or pus-filled bumps on the skin.   Humira may also lower your ability to fight off infections, so if you do get sick it is important to speak to your doctor.  Sometimes when sick, you need to skip a dose or two of the Humira to help get over the infection. 
As always it is important to contact your doctor immediately if any of these, or other side effects might happen while on this or any other medication! 

Humira seems to be one medication that has sort of worked for me over the years.  I've had horrible allergic reactions with many other medications, and am at the point now where I don't have many options left.  I've never had a reaction to Humira, so my doctor keeps me on it with conjunction with another medication.  Currently, it's Methotrexate and for now it seems to be doing okay.  If this doesn't work, it will be time to stop both medications and start from scratch.  It would be great to just find that one medication that works, and works well.  There is no cure for autoimmune diseases like RA, but there are medications that can help us feel somewhat normal.  I hope that all of you fellow RAers, and others who suffer from illnesses, find medications that work for you. 

Thank you to everyone who continues reading my blogs, I truly appreciate it!  As I said in the begining, I will be taking a two- week vacation so no blogs for those two weeks. I'm going on a road-trip to visit my good RA friend, Brenna and then to visit my fiance's dad!  Brenna and I wrote a blog together back in March, so those who are interested can read that as well. :)  I will write one when I get back, and will tell you all about my fun trip! 

Have fun, be safe! xo

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