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, 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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10 Comments:

Anonymous Anonymous said...

You are absolutely amazing Mallory!! I love you x a million! Thank you so much for saying it the only way it should be said...raw...but so, so true! You have been such a great help to me while dealing with this illness! You simply inspire me to make the best of myself and my life while I suffer this disease! And the awful pain! I love reading your blogs! They always help me, and my family! I am so grateful to you! I agree we should all be grateful for something! I'm very grateful for my loving husband and my sweet daughter! I'm so grateful they love me and care for me! And I'm so grateful for my good friends like you! Life has not been easy for me lately...and sometimes I just have to cry it out! But I get through it. And there's always those sunny days ahead that make me feel much better! Keep writing my sweet friend! I love it!!
-Angela

December 16, 2011 at 6:49 PM  
Anonymous Katie said...

Hi Mallory. Thank you for this post. I was feeling down because of the RA pain and honestly feeling a bit sorry for myself. I just discovered the RA Facebook page today and ran across your blog. I have not been through half of what you have and I was only diagnosed a year ago at the age of 34. I needed this reminder. I think you are brave and from your photo beautiful as well.
Katie

December 16, 2011 at 9:41 PM  
Anonymous Anonymous said...

are you on facebook?

December 16, 2011 at 10:26 PM  
Blogger Mallory said...

Angela - You know I love you girl! <3

Hi Katie! Thanks for reading my blog. Yes I am on facebook! (I'm guessing you were the one who asked) I have a page dedicated for my blog here: https://www.facebook.com/#!/pages/JRA-Journal-of-a-Rheumatoid-Arthritis-Chick/123301637755084

Or feel free to add my personal page as well. you can find it listed under Page Owners on the left hand side of the page above (Don't want to list my full name here!)

December 16, 2011 at 10:30 PM  
Blogger Rachel said...

Hi Mallory,
I found your blog from Facebook, and I am also living with JRA. I love your blog and I find you inspiring. Feel free to check out mine, too! It's also about living with arthritis.
www.thekidwitharthritis.blogspot.com

Thanks,
Rachel

December 22, 2011 at 11:57 AM  
Blogger Mallory said...

Hi Rachel!

Thank you for reading my blog, and your kind words. I will check out your blog and start following you! :)

December 24, 2011 at 10:28 PM  
Anonymous Anonymous said...

its so good to feel im not alone after reading your blog

January 25, 2012 at 11:50 AM  
Blogger Lana Kitele said...

its so nice to see someone else talk about the things i feel too! makes me feel less alone

July 7, 2012 at 5:13 PM  
Blogger Amy Nicole said...

Thank you for writing this. It speaks for so many of us living with autoimmune disease. Thank you for your voice when others can't find the right words!!!

August 14, 2012 at 10:49 AM  
Anonymous Anonymous said...

I am 53. I fall through every crack there is for financial and medical help. I am glad for Obama that I may now be able to get ins. How long have I had this terrible disease is a big question I have. I had a bonionectomy and ozgoodslaughters sp? Diagnosed at 12 yrs old. Not untill I could not walk or use my arms was I diagnosed. For many yrs of pain I have been called all the names when looking for relief. I should have complained more and maybe I would have been diagnosed many yrs ago and able to get assistance. As a stay at home mom and wife due to not being able to hold a job no gov assistance is available. Just venting but if you have answers I a glad for them.

March 5, 2013 at 6:00 PM  

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