Tuesday, September 17, 2013

(Hazardous if Touched) Patients for a Moment (PFAM) Blog Carnival Post

The topic for this month is "What does your illness feel like."

"On a scale of one to 10 rate your pain." The only doctor's office who doesn't bother much with that question anymore is my Rheumatologist. Everywhere else, I usually roll my eyes and tell them to pick a number and multiply.   

Living with Rheumatoid Arthritis, Sjogren's Syndrome, Lupus or any of the other Autoimmune Arthritis Diseases feels like you are a being beaten
 with a baseball bat, stabbed me with a hot poker and ran over me with a tank on a daily basis. 

Imagine your worst day with the flu, now multiply that by 1000, the fatigue so bad you can't get out of bed. I feel like that everyday but I do get out of bed. 

 How about that time you broke a
bone, remember the pain, what if it never healed? Do you remember the pain from the surgery you had? How about your worst headache or toothache? Magnify that and think about what it would be like if it never went away.

I also get the bonus of fingers and toes that tingle all the time. I stagger all over the place due to dizziness, I don't even get the benefit of enjoying a drink! I have pain on the top of my head so laying on my pillow hurts as well.

Sjogren's Syndrome means my eyes feel like they are full of grit and are blurred and sometimes I see bright lights and I get a lot of headaches, it also means my mouth is so dry I can't go without water for even five minutes, I have serious damage to my teeth due to dry mouth.

Raynauds means my fingers and toes turn blue when they get cold and then burn from the pain.

My body aches, pops, cracks, snaps, like a much angrier rice crispy commercial. I can feel the swelling from the fluid in my body making the skin on my hands and feet feel tight and more painful. I feel uncomfortable in my own skin. Clothing hurts me, being touched hurts me, breathing hurts me, being awake hurts, I can't sleep, I'm so tired from the disease I can't function but the pain keeps me awake.


Having these Autoimmune Arthritis diseases feels like my body has been taken over by some evil force and there's no fighting it. The battle goes on internally cells battle each other and kick me in the joints. 

Anxiety is another feeling with these diseases, Where will I be comfortable? What can I wear to be comfortable? How far can I travel? Where is the nearest rest room? Where is the nearest water? Will their be stairs? Will people stare at me because I have to park in handicapped parking? All of these make me feel anxious. 

Having these illnesses makes you feel isolated, since some people don't understand or want to understand what you have. People will forget about you, or you stay home a lot since you are too ill to go out. People assume you don't want to socialize when the reality is you would love to.

On the other hand, there is the wonderful feeling of when you find people who care whether it be online, people like you or healthy people.
I have found both online, and an absolutely amazing group I volunteer with and advocate for my diseases. That makes me feel empowered, keeps me busy and gives me the attitude that this disease will not take over my life.

This is what it feels like the day in the life of an Autoimmune Arthritis Disease patient. There is a lot of bad, but through it you can live and find a life for yourself. 





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Thursday, September 12, 2013

Fun Friday Blog Hop Week # 37



The Pink Momma
HOSTS:

 
 
Meet our lovely Co-Hosts for this week: 
 

First of all, thank you for joining us every week. 
Please follow the hosts and the co-hosts, there are many ways to follow us.
(GFC, Bloglovin, Facebook, Pinterest, Twitter, Google+, Instagram, Email

Grab our party button and share the love. It's not required but it's greatly appreciated :)

Please leave a comment with your blog address if you are a new follower, we'll be glad to return the favor.

Every week we will choose one featured blogger. 
The chosen one will get a FREE one month ad space from 
The Pink Momma and Home for 4 Sweet Home.


Congratulations to our Featured Blogger of the Week! 

Brianna of Endlessly Beloved


 
Grab the featured button and share the love :)

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Link up your blog, visit other blogs, make friends and have fun!

If you would like to be a co-host, email at thepinkmommablog@yahoo.com.




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Tuesday, September 10, 2013

International Foundation for Autoimmune Arthritis news, ACR and what you can do.

I mentioned a couple of posts ago I had news about the International Autoimmune Arthritis Movement. Here it is! IAAM has become the International Foundation for Autoimmune Arthritis. That said, our mission will expand to include patient centered research, support, and legislation and advocacy.
IAAM will become a part of IFAA. We hope you will join our new Facebook page here.

Second, right now two of the IFAA/IAAM founders are in Washington as well as one of the volunteers, taking part the American College of Rheumatology's, Advocates for Arthritis 2013 Summit. IF you go to the Facebook page you can follow their progress through pictures.




Photo: And we're off!
Are YOU ready to join the team of advocates in Washington D.C?  IFAA'er Co-Founders Tami Brown and Kelly Conway, along with Volunteer Therese Freeman Humphrey, have made their way to Capitol Hill and are telling their stories to the Congressional Representatives in their states/territories. NOW IT'S YOUR TURN!

Please see former posts from yesterday (on this page) that explain the three issues they are highlighting for the office visits (which are approximately 10-20 minutes depending on how busy each office is with other type of visits).  What is YOUR story?  Why are these issues important to YOU and what can you tell them to personalize the issues?

Think about YOUR STORY and stay tuned as we walk you through the DC experience...concluding with YOU sending YOUR story to YOUR REPRESENTATIVE in DC!






If you live in the United States you can participate virtually. 

Follow this link www.rheumatology.org/actioncenter  

Here's one of the issues this year from the ACR website

 "H.R. 460 would allow more patients to access biologic drugs by limiting the patient cost-sharing burden that can be imposed for these treatments. It would limit cost sharing for treatments placed in a specialty drug tier (typically Tier IV or higher) to the highest cost-sharing a plan requires for drugs in its most expensive non-preferred brand drug tier (typically Tier III)."


The ACR has a pre written email that you can personalize. You can also find your Representative and email them, or if you prefer print out and send them a letter.





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Monday, September 9, 2013

Invisible Illness Week 30 Things Meme


1. The illness I live with is: Rheumatoid Arthritis, Lupus, Sjogren's Raynauds, Migraines, I will stop here or I will be typing all night.
2. I was diagnosed with it in the year: 1988
3. But I had symptoms since: Age 8
4. The biggest adjustment I’ve had to make is: Slowing down, losing some of my independence
5. Most people assume: They know what I have, how it feels and how to fix me
6. The hardest part about mornings are: Waking up after not sleeping all night
7. My favorite medical TV show is: Monday Mornings
8. A gadget I couldn’t live without is: My Laptop
9. The hardest part about nights are: Trying to sleep
10. Each day I take __ pills & vitamins. (No comments, please) 12
11. Regarding alternative treatments I: Have tried a couple and have an open mind
12. If I had to choose between an invisible illness or visible I would choose: I accept what I have and try to educate others in the hope one day we won't have to worry about what other people think.
13. Regarding working and career: I miss the feeling of accomplishment and the paycheck and socialization.
14. People would be surprised to know: How capable I am, when you are ill for so long people seem to think you are no longer useful.
15. The hardest thing to accept about my new reality has been: How lonely and isolating life can be.
16. Something I never thought I could do with my illness that I did was: Volunteer
17. The commercials about my illness: Misrepresent the majority of patients
18. Something I really miss doing since I was diagnosed is: Dance
19. It was really hard to have to give up: Dancing, Socializing
20. A new hobby I have taken up since my diagnosis is: Movies, Blogging
21. If I could have one day of feeling normal again I would: Travel
22. My illness has taught me: Patience
23. Want to know a secret? One thing people say that gets under my skin is: I have Arthritis too!
24. But I love it when people: Ask me how I'm feeling and mean it.
25. My favorite motto, scripture, quote that gets me through tough times is: 
Do what you can, where you are, with what you have. –Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: Never give up.
27. Something that has surprised me about living with an illness is: People don't want to hear about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me a get well book
29. I’m involved with Invisible Illness Week because: It is an important cause. We all deserve the right to be visible.
30. The fact that you read this list makes me feel: Appreciative.





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Friday, September 6, 2013

I'm drawing a blank!

Okay I'm going to be completely honest with you here,  I have these great post ideas, I know exactly what I'm going to say. I have them ready to go then I draw a blank when I get to my computer. Every thought happens when I'm standing in the kitchen, taking a shower, on a road trip, everywhere but here!

Having Autoimmune Arthritis is a pain in the butt as it is as far as brain fog goes, I find things in random places. Lose random things in strange places. Leave my glasses in the bathroom at Target.

So, I sit at my computer and remember I was going to move my blog, but how? Where? Then I realize I need or want a name change when I move. What would it be? When I started this blog naming it was easy. I thought I would only write about Life with RA, but that doesn't define me as a person. The same goes to my other Autoimmune diseases. I always say,"I have Autoimmune Arthritis, it doesn't have me."

So, when I move what should I call myself? Where should I go? 
Am I rambling? Yes, I am! I'm not focused, not sure where I'm going. I know I want to enjoy what I'm doing. I just don't know how to get there.

Any and all suggestions would be greatly appreciated, and is needed!

In the meantime, I will look for the nearest dirt track and go find a race to watch and probably come up with more great unpublished posts :)

Have a great weekend!









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Thursday, September 5, 2013

Salese Dry Mouth Comfort Review

If you have been following my blog you know I deal with Sjogren's Syndrome on a daily basis. I struggle with dry eyes, dry mouth, dry hands which are hallmark symptoms of Sjogren's.

Here is the definition from the Mayo Clinic site. Sjogren's syndrome is an autoimmune disorder in which the glands that produce tears and saliva are destroyed. This causes dry mouth and dry eyes. The condition may affect other parts of the body, including the kidneys and lungs.

I have tried medications over the years, and over the counter products as well. A few weeks ago I was approached to try a product I had never heard of called Salese  Dry mouth Lozenges.
I was skeptical due to the severity of my dry mouth, but agreed to try it. I was sent two full sized boxes to try. One was wintergreen flavor and the other mild lemon. I tried both and was a fan of the wintergreen, the lemon had a bit too mild of a flavor for me but both relieved my dry mouth. Another great thing about this product is it is sugar free. My my mouth was moist which it hasn't been in a long time. I will definitely buy this product in the future.


This is the first time I have written a review on my blog, I will only write reviews on products I believe in. I did not get compensated for writing this, with the exception of the product to review.



Salese Website


Salese Facebook

Salese Twitter


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