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!

Friday, May 27, 2011

My procedure/Update

First off, SO sorry I have not written a blog in a long time.  I have been so busy, and just waiting on results to update you all on.  I am going to try, again to get back into the blogging, because I love it!  Let's start off with an update blog on how things have been going in my crazy life!

Well, I had my colonoscopy on Monday May 9th.  The prep beforehand was so awful, I had to drink this awful drink that tasted way more disgusting than prednisone.  It is meant to clean out your digestive track, so I was on the toilet for hours, ah....letting it all out.  Lovely, huh?!  The actual procedure was a breeze, I was knocked out completely with the lovely anesthesia.  I guess the process only takes about 15 minutes or so, which isn't bad at all.  When I came to, they said they couldn't diagnose anything other than some internal hemorrhoids (see below).  They took some biopsies to hopefully get some results, and better assist in diagnosing me. I had to wait about 7 days for the results.  The doctor called, and said she she doesn't know what is wrong with me! She said it could be Crohn's, but the medication I take for my JRA is also used to treat Crohn's, so the medicines could be working and masking the symptoms.  So, she wants me to have an endoscopy, just waiting for the secretary to call me with the date of this procedure.  So, more waiting and worrying for me! Ugh.

Oh for those who wondered what internal hemorrhoids were (as did I), so of course, I looked it up.  I took this right from Web MD: "Internal hemorrhoids often are small, swollen veins in the wall of the anal canal. But they can be large, sagging veins that bulge out of the anus all the time. They can be painful if they bulge out and are squeezed by the anal muscles. They may be very painful if the blood supply to the hemorrhoid is cut off. If hemorrhoids bulge out, you also may see mucus on the toilet paper or stool."  The good news is, treatment is just a high fiber diet, and watching to not eat so many processed foods.

One good thing that seems to be happening, is my joints have been doing well for the past two weeks or so.  I'm hoping the combination of the Methotrexate and Humira is actually working. I've had a little stiffness in my fingers in the morning, and my knee will have some pain if I do too much activity, but if I rest I feel better. I can't remember ever feeling this good. I'm hoping this combo is working for me. I see my rheumatologist next Wednesday, so hopefully I'm still feeling this way so we don't have to discuss a whole new course of medication(s). Also, hopefully this will last a while -- in the past when I've found a medication that "works", it doesn't last very long. We will have to hope and see!

My birthday was on Monday May 23rd, and had a party on Saturday the 21st with just some close friends.  It was fun, and had a pretty good birthday.  I got a Kindle, which was exciting! It will definitely help when my fingers are bothering me. 

Alright, again sorry it has been a while.  As always, what are YOU interested in seeing in the blog? Let me know and I will start doing some research, thanks! (((hugs))) and well wishes to all! :)

Tuesday, May 3, 2011

Sleep, stop messing with me!

Sometimes I really don't understand how my body works, I think it likes to mess with my mind.  At least I'll always be on my toes and look forward to an "exciting" life, haha.  I've been dealing with a virus for the past two weeks now, and for the first week and half all I did was sleep!  I was so exhausted, and slept about about 13-14 hours a night.  Now, for the past few days, sleep has evaded me!  Especially Thursday night, I think I got about four hours, and woke up pretty early.  I just could not get comfortable for the life of me, every spot I moved to, hurt a different part of my body.  I ended up feeling okay when I finally got up around 630am, but as the day progressed, my body was getting more and more tired.   I have a hard time taking naps too, I need darkness when I sleep and my apartment has these huge, beautiful bright windows that let in the light.  I try covering them up in my bedroom, but it still doesn't seem to help me.  I feel like the only way I get a good night's sleep is if I take some Tylenol PM or my cough syrup with codeine.  I don't want to take sleep medicine and get addicted, I just need to find different ways to help me sleep. 

Does anyone else have difficulties with their sleep patterns?  I notice that my sleep is definitely affected by stress, excitement, pain and worry.  I'm due to have my colonoscopy in a little more than a week, I know I'm worried about it and am sure this lack of sleep is due to that.  I wonder how much my medicine plays a part, I'm sure some.  Also, having to miss my RA meds due to me being sick, my joints are hurting and can definitely affect our sleep in more ways than one.  As always, I looked into some different tips and ideas for a better night's sleep.  Hopefully this can also help any of you who have trouble catching some zzzz's.

1.  Try to go to sleep and wake up at about the same time everyday, even the weekends.  Having a regular sleep pattern can help you fall asleep easier at night.

2. Nap every single day, contrary to different beliefs, naps can help you sleep better at night.  However, keep it short about 20-30 minutes, and try to keep it early afternoon.

3. Go to bed when you're tired! Turn out the lights and get into bed, however if you don't fall asleep within 15-20 minutes, don't agonize and stress over it. Get up and try to do a few things until you feel more tired.

4. Don't take a hot bath close to bed time.  Your body sleeps better when it's cool, so if you want to take a bath make sure it's at least two hours before bed.  Your body takes about an hour to fully cool down. 

5.  Make your room cool and comfortable, create an environment that's good for sleep.  Use dark, light-blocking curtains, ear plugs, eye mask, a fan, and/or a humidifier.  If you want to sleep well, you need an environment that is good for you!

6. Exercise regularly, and intensely!  Getting exercise, especially when it physically exhausts you, can definitely help you sleep.  Intense workouts vary by person, some people are able to run 5 miles, others only 20 minutes on a stationary bike, whatever gets your heart racing and makes you feel tired afterwards.  Avoid exercising right before bed though, it can make falling asleep more difficult.

7. Avoid nicotine, caffeine and alcohol in the evening, since they all act as stimulants and can definitely distrupt your sleep.  Caffeine takes a while to get out of your body, so they say try to stop any caffeine intake 8 hours before sleep time.

8.  Watch what you eat and drink before bed, try to stop any intake of food or drink at least two hours before bed.  Those prone with heartburn, can make it worse by eating before bed, and drinking too many liquids will have you up a few times during the night using the bathroom.

9.  When you wake up, get some sunlight and if you can, go outside.  Don't lounge in bed for a while, when your body feels sunlight it registers it's time to wake up and sets your internal clock to go to sleep 14-16 hours later.

10. Turn off the TV and stop computer work 30 minutes before bed.  While these activities seem restful, they actual stimulate the brain, causing you to be more awake.  Instead, read a book or do a few minor things you need to get done off your to-do list.

11. Choose the right mattress and pillow.  Having a comfortable bed will help, and if children and pets are disruptive, try to avoid them coming in to disrupt your sleep as often as you can.

12.  Have a regular bedtime routine.  Doing the same thing every night will tell your body it's time to sleep.  Whether it's reading a book, drinking some hot tea, or listening to relaxing music, try to do it with lower lighting so your body knows it's dark out.

13. Use sleeping pills as a last resort.  If you're having lots of trouble sleeping it's advised to speak to your doctor about it so they can prescribe you the correct medicine and dosage. 

14. Keep a journal or pen and paper near your bed.  Often I wake up, or can't fall asleep because my mind is running a million miles a minute and thinking of different things I need to do.  By writing down these ideas and/or tasks, it can be taken off your mind and make you worry about it less. 

15. Block out noise! Some people get easily distracted and awoken by different noises, especially in an apartment building.  Use a fan or a/c to help block out some noise, don't block it all out though, in case you need to get out in an emergency.

Some of these tips I've tried in the past, and some I think I will implement into my nightly routine.  If anyone has any other tips or advice for a better nights sleep, feel free to let me know.  I hope these tips can help all of you sleep better.

Sweet Dreams everyone! :o)