Thursday, December 19, 2013

Too many things to come up with one title

This is the post that almost never happened. I typed it yesterday, went to preview mode, that’s when something went terribly wrong. Take two! I calmed down, decided to try again, after thinking "maybe I was never supposed to blog again"! 


I wrote the whole thing again, as much as I could remember from the first time as you will see by the random yada yada’s in here, and I should have been all set! You would think so, but no! I forgot to post it.

So here we are a day later, with my final attempt, if you are seeing this post I apologize in advance. I’m just glad it made it onto my page:)

(Here is how I started this post the first time I wrote it, at least this is a version of it. In other words I can’t remember):


 If I had a dollar for every time I tried to write something on this blog the past few months, I would have enough money to pay 
someone to write a post for me!

Now I'm drawing a blank! Okay, it went like this I think! This past year has been tough as you know, more has been going on with me than I've talked/typed about. I have a tendency to keep things to myself, yada, yada, yada.  I told you I forgot!


Okay I think I was saying, I ended up with an extreme bout of anxiety that during normal situations I can handle without medication. This last year has been far from normal. I won’t bore you or depress you with the details. I gave in, took my doctor’s advice and started both medication and therapy. I’m not embarrassed to say I need medication for anxiety for the moment, anymore that I am to say I need medication for the Autoimmune Diseases I live with on a daily basis.  Stress declared all out war on my body, sleeping has been almost impossible. 

So, this is where I am at now I’m learning I need to start putting myself first, I have never been very good at that. 
I don’t know if that is part of being a mom, selfishness doesn’t come easy to me. I have to learn to treat people the way they treat me and get rid of the negative in my life. I have to focus on the positives, they exist around me I can’t let the negatives drag me down with them.

 This is not exactly what I wrote the first time, but I forgot what I did an hour ago, this is as good as it gets :)

On to the positives in my lives, my friends, even though they are far and wide, scattered all over the world, they have been there for me. They reached out when they or me for that matter didn't know I needed them the most. They picked up the phone and called me on days nobody else did, they sent e-mails, messages, just to make sure I was okay. I'm grateful and thankful for all of them.

I’m also thankful for my husband, he has been the one constant in my life, he has been here for me no matter what. We have good and bad days, but through it all he sticks by my side no matter what.  

The many amazing people I volunteer with at the International Foundation for Autoimmune Arthritis
They inspire me each day to try harder, to do more, to learn more and to never give up. 

If you would like to help IFAA in a small way you can go to Amazon Smiles they will donate 0.5% of your purchase to IFAA.

I would like to ask you to send healing thoughts to Kelly one of the ladies in the picture. She fell, broke her leg and will be laid up for 3 months.

While I’m on the topic of IFAA I have amazing new to share with you! Janssen Global Inc. will be funding IAAF’s first patient-centered research project starting in January of 2014. Thank you Janssen!


IFAA is also getting ready for WAAD 2014 here is a preview:




The next positive thing, okay I had a hard time writing this the first time! Let's try this again. I'm honored and amazed to have been nominated for two awards in the 2013 WEGO Health Activist Awards. I don't like to ask for things so I will just say if you would like to you can click on either the Rookie of the Year button or the  
Health Activist Hero logos below it will take you to my profile and you can endorse me. I would appreciate it if you could endorse the other members of IFAA as well as IFAA itself.  You can also add your own nominations. I said the first time I typed this I'm just honored to be nominated and I truly mean that, I'm in the company of many amazing people. I will try and post the logos on my page as well.





Are you still reading? Sorry this is so long, it's been a while! I will try to write a shorter post next time. I still have to catch up on posts from summer, Halloween, Thanksgiving. 

I also still plan on moving this blog after the New Year and will do a giveaway of some kind. I realized 
it has been over a year since I started. No, it won't be a new car unless you want one of my grandson's hot wheels cars :)

Last I think? I hope you all have a wonderful holiday and take a moment to remember those who are not as fortunate to have anyone to spend the holidays with. Chronically ill people as well as others tend to end up alone since stress can make us too sick to attend family events. Consider visiting, the greatest gift you can give someone who is sick is your time, that goes year round. For those of you who 
are feeling alone, know you're not. There is a whole community of people out here willing to listen, reach out. I have found even though my illness isolates me, there are many great people online who truly care and understand. I hope you’re lucky enough to find even one person to connect with, it makes a difference. 

To all of you thank you all for caring enough to read this blog, you have made this a positive experience. I enjoy getting to know you through your blogs, your stories and your pictures they brighten my days. I hope the holidays bring you everything you desire.




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Sunday, November 10, 2013

A Letter from The International Foundation for Autoimmune Arthritis's CEO

The aftermath of my travels to the NIAMS Coalition. Please share to help everyone understand the realities of autoimmune arthritis diseases.


(Tiffany) As CEO of IFAA, and autoimmune arthritis patient, I understand these diseases and the toll they can take on the body. If you view a photo posted of me yesterday morning, right on this page, I'm smiling, happy, and looking "normal". I'm speaking with the Director of NIAMS- the arthritis division of the National Institutes of Health. A highlight, an honor, a moment I will always cherish not only due to the outstanding work performed by Dr. Katz, but because I'm humbled as a patient to have shaken the hand of a man who works day and night to better my life and those in our community.

Now the reality of how much I truly know about these diseases- how much I understand. I am you, you are me. I flew from Los Angeles to D.C. on Tuesday, prepared for the trip and potential flare for days prior, working from the sofa and resting as much as possible. I knew Wednesday would be a 13 hour day, filled with back to back meetings, in a different time zone, jetlagged and sore from travel. As the day winded down the fatigue was so powerful I sat alone in the restaurant barely able to put fork to mouth, yet still the blur of the days triumphs keep an internal smile inside me that kept til morning.

I took a long bath before bed, preparing for the long flight home in the morning, hoping my body wouldn't freeze in response to the extreme use the day prior. I anticipated a fever, fatigue, and general flu-like feelings, so I planned my outfit for travel accordingly, buttonless/zip-free pants with a pull over top and walking shoes that could be easily, yet discreetly, slipped off under the plane seat in front of me. I then traveled across country home, just 2 days after the original departure, and basked in the outstanding memories of the science heroes I had the honor to meet. I smiled at the thoughts of the CEO's and other advocates I sat next to, shared conversations with, and will continue to walk side by side together in our fight for the community. Then as I made my way back to my home and relaxed on the sofa, I realized all the preparation I planned to ensure a minimum flare was simply not enough. Within hours of landing, here I sit- or barely sit- with an outbreak of shingles that are placed such it makes it difficult to sit or lay comfortably. They will certainly trigger a full flare, joints-tissues-and flu like symptoms, and I may be laid up for a bit. But I want you to know it was all worth it. Every moment of the fatigue, every minute of pre-travel prep, and now every moment of discomfort. It's worth it, because I met scientists who listened, I talked with leaders who want to unite for change, and I was invited to sit side by side the scientists and doctors at the NIH to become the 2nd patient ever to help NIAMS review their grant applications in 2014.

I could have posted more pics of me, smiling and cheering for this step towards victory. But as a patient myself, and the leader of this nonprofit, I choose to tell the truth. To let the world know that every single second of my trip was worth the journey. But that journey comes with a price. We may look 'normal' on the outside but when we push, even if we plan accordingly, our bodies' will respond with a vengeance.

I'm not posting this to complain or for sympathy. I am not looking for 'fans' or for praise. I am posting this to show that I am a real patient with real consequences for pushing my limits and doing my job. But this is the role I chose- the role of an advocate. I, and the rest of those with IFAA who also are patients, will continue to sacrifice as needed to ensure our community is heard and changes to research are made.

Did I get shingles and flare due to the trip? Yes. But I shook the hand of the director of NIAMS and sat next to some of the most amazing community heroes...and I'll do it again and again.

IFAA is the first and only nonprofit that focuses solely on clustering together these few diseases in order to solve the equation:
Early Detection=Early Referral=Early Diagnosis=Early Treatment=Earlier Possibility for Remission

We are changing the world the best we can. Every limping, flaring, and blistering step at a time.




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Wednesday, November 6, 2013

News from The American College of Rheumatology 2013 Meeting

Today, I would like to share an exciting survey with you that was presented at the annual by CreakyJoints and Janssen at the American College of Rheumatology's annual meeting.

CreakyJoints is an Arthritis Support Community for people living with RA, OsteoArthritis, Rheumatic Diseases as well as their caregivers. 

As a leader in Immunology, Janssen is committed to the Rheumatology community focusing on providing therapeutic options and support to patients living with Chronic Rheumatic conditions.

Highlights of the survey shows how important communication with your Rheumatologist is,
It also shows that patients are open to more than one type of therapy. I will provide the info-graphic and the full release below.

 Here is a link to a brief video presentation from Creaky Joints Co-Founder Seth Ginsberg:





I hope you will find it as interesting as I do, it shows we are heading in the right direction and I hope you will share it.







STUDY FINDS SURVEYED PATIENTS WITH RHEUMATOID ARTHRITIS ARE MORE
OPEN TO DIFFERENT MODES OF BIOLOGIC THERAPY ADMINISTRATION THAN
RHEUMATOLOGISTS BELIEVE

More Patients Expressed a Preference for Infusion Modes of Administration than Rheumatologists Believed

SAN DIEGO, October 28, 2013 – Data presented by Janssen Scientific Affairs, LLC, in collaboration with the patient advocacy organization CreakyJoints, reveal that more than half of surveyed patients with rheumatoid arthritis (RA) were open to both subcutaneous (SQ) and intravenous (IV) biologic therapy, and that more patients preferred IV biologic therapy given by a healthcare professional than surveyed rheumatologists believed. The data are being presented at the 2013 Annual Meeting of the American College of Rheumatology (ACR).

Approximately 1.3 million people in the United States are living with RA,[i] a chronic, systemic inflammatory condition that is often characterized by symptoms that include pain, stiffness and inflammation, and in some cases, joint destruction and disability.[ii] Current guidelines for the treatment of RA recommend that patients who are not adequately responding to treatment with disease-modifying antirheumatic drugs (DMARDs), most often methotrexate, initiate treatment with biologic therapy, a genetically engineered medication that can interfere with inflammatory substances in the body.[iii] Biologics are administered either by subcutaneous injection, by a healthcare professional or the patient, or by intravenous infusion at a hospital or certified infusion center.[iv] 

“The results of this study emphasize the importance of effective communication between patients and providers. Patients should be open with their rheumatologist about their disease and treatment to ensure they are actively contributing to their treatment plan,” said Seth Ginsberg, co-founder and president of CreakyJoints.

The purpose of the study was to explore openness to and preference for IV and SQ formulations of biologic therapy among adult patients diagnosed with RA and currently treated by a rheumatologist with DMARDs prior to biologic initiation from the perspectives of both patients and prescribers. A total of 243 patients were recruited through CreakyJoints (n=101) and a consumer panel (n=142), while 103 prescribers were recruited through a physician panel to compare patient perspectives to rheumatologists’ perspectives. The study found that overall, 53 percent of surveyed patients with RA were open to both SQ administered at home and IV biologic therapy administered by a healthcare professional if suggested by their rheumatologist; whereas prescribers believed only 41 percent of patients were open to considering both forms of biologic therapy. Among all surveyed patients, 16 percent were open only to SQ, 14 percent were open only to IV and 16 percent were open to neither. However, surveyed prescribers believed that 34 percent were open only to SQ, 13 percent were open only to IV and 12 percent were open to neither. When asked about preference for SQ vs. IV administration overall, 28 percent of patients reported that they prefer IV therapy given by a healthcare professional, while prescribers believed only 16 percent of patients prefer IV. Twenty two percent of patients reported no preference, while 49 percent preferred SQ self-injection given at home. Prescribers believed that 31 percent of patients had no preference, and that 52 percent preferred SQ. Patient openness to and preference for SQ versus IV administration was further influenced by frequency of administration, time to complete an infusion and site of care.

“These data show that rheumatologists are well positioned to guide the shared decision making process with patients to ensure that patients are provided with information about all appropriate biologic therapy options with different routes of administration, and that patient preferences are considered,” said Susan Bolge, Ph.D., Director of Health Economics & Outcomes Research at Janssen Scientific Affairs.

About the Study
Data were collected online from both patients and prescribers through self-administered questionnaires. Patients were U.S. adults (aged ≥18), diagnosed with RA, currently treated by a rheumatologist with disease-modifying antirheumatic drugs (DMARDs), and with no history of biologic use but had discussed biologics with their physician. Prescribers were board-certified rheumatologists, practicing for 2-25 years, spent ≥50% of their time in a clinical setting seeing ≥50 RA patients per month, and were not government employees or employed by or consultants to pharmaceutical companies. A total of 243 patients were recruited through the patient advocacy organization CreakyJoints (n=101) and a consumer panel (n=142); 103 prescribers were recruited through a physician panel. 





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Saturday, November 2, 2013

IFAA Designer Awareness Bracelet Sale, Don't miss out!





If you've been reading my blog for a while you know I'm an active volunteer for The International Foundation for Autoimmune Arthritis or IFAA/IAAM. What you may or may not know is IFAA started out as "The Buckle me up Movement," in IFAA founder Tiffany Westrich-Robertson's own living room. Tiffany used one of her many talents to create an awareness bracelet for Autoimmune Arthritis, she wore the bracelet to an Arthritis walk, someone saw the bracelet and shared it on their blog. Since that day the movement to create awareness took off. What started out in Tiffany's living room from frustration due to the lack of people understanding Autoimmune Arthritis, it has blossomed into a full blown foundation.  IFAA's mission is early detection, resulting in early referrals, which leads to early treatment, which equals a chance to achieve remission.

All of the jewelry Tiffany creates is unique, and comfortable! Here are a few pictures of mine. 

The Original Bracelet





All of my Amazing Jewelry!





I am proud to be a volunteer with IFAA, we all live with the difficulties Autoimmune Arthritis brings, together our organization runs 24 hours a day.  When one person is having a bad flare there is another volunteer to step in and take over from another part of the world. 

You may have noticed I haven't posted much recently. I have been having more issues with my eyes due to Sjogren's Syndrome. My vision has become more blurry and looking at a computer screen is increasingly difficult. Winter in Minnesota has barely begun and I am feeling the effects of the dry eyes, dry skin and I am having nose bleeds. 

My hands and feet are turning that wonderful shade of purple which means Raynauds has reared its ugly head. How many days until summer?  I am also finding it harder to type as the joints in my hands hurt, they are swollen and sore most of the time due to a continuos flare. My last doctors visit confirmed what I suspected, I need surgery on at least one of my feet. The conversation went something  like this, "You can wear bigger shoes, or have surgery." I chose until as least after the holidays to wear bigger shoes, actually I said I will wear clown shoes if I need to! There are too many things going on right now I don't have time to have surgery.  This is the reality of Autoimmune Arthritis. I continue to work with my doctor to find the right combination of medication, I continue to get up and battle these diseases everyday as I have for 26 years. One day I hope because of IFAA someone won't have to fight so hard for so long.

Thanks for your continued support I truly appreciate it and although I don't comment as much these days I do read your blogs and look at your pictures.

One last thing, if any of you with Autoimmune Arthritis would like to write for the official blog of IFAA Systemically Connected please send me an email at  Lorna@ifautoimmunearthritis.org




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Tuesday, October 22, 2013

You can change my body, not my fighting spirit. (Patients for a Moment PFAM post)

How has my life changed since I heard the words "You have Rheumatoid Arthritis." I thought it was a mistake! I had to change my thinking I learned that RA is much more than just Arthritis. Rheumatoid Arthritis doesn't just happen to "old" people. Anyone can get sick. It doesn't matter what color, what age, how much money you have, what kind of food you eat or where you live. No matter how many times you say that can't happen to me, it can and does happen everyday to millions of people of all ages.

RA attacks your immune system and your body attacks you. You feel like you have a super magnified version of the flu that would keep you in bed for days but you don't have time for that. I didn't, I was in my 20's a mom and had to go to work everyday. Then I couldn't, I was flat on my back in the hospital with an IV drip filled with cortisone shoved in my arm.

My joints were deteriorating fast and my wrists fused on their own. This all led to surgical fusions and a knee replacement. I got an education on medications that I previously thought were used in Cancer patients. Needles, IVs, insurance companies and blood work became a routine part of my life. My once active social life is now reduced to checking my Facebook and Twitter pages. I'm are too exhausted from fighting my disease/diseases to go out with any of the people who remain after they found out I can't keep up since I got "sick." 

Your family now judges you, looks at you with either pity or disgust. They wonder why you can't do things that person down the road who has the same disease can do. You hear "maybe you should walk more." 
"Maybe you should try this medication, it worked for (insert random name here.) 

 Since I became sick people think I no longer have a brain, like somehow being sick has reduced my intelligence level. I'm not sure how or why this happened. Am I not the same person who  worked a job, was trusted to make decisions, assisted teachers in my child's school, the same person who made it through a divorce, raised kids, volunteered and did so quite competently?  I will admit to having days of being what I call "foggy" but I know plenty of "healthy" people who have days like that too.

I have always been independent and fight daily to stay that way. Asking for help is a major change and not easy for me. I find when I need help, people make me feel guilty for asking or there is nobody there. Everybody is so busy living their healthy lives they don't have time to deal with me. I end up trying to do it myself then the same people get angry at me for doing it. The sad part is the same kind of people exist 26 years after my diagnosis. My hope is that 26 years from now, hopefully sooner people will be more understanding.

Twenty-six years of fighting first one illness now several Autoimmune Diseases plus Migraines and stomach issues has taken its toll both physically and mentally. The changes these illnesses have brought into my life are endless. My body in scars from wrist fusions, to a knee replacement, to cataract surgeries from years of prednisone use. I don't remember what a day without pain or fatigue feels like. I have learned to live with both. I think sometimes the emotional effects are just as bad if not worse than the physical. I have dealt with  anxiety, loneliness, anger, guilt, fear of losing my independence, and a strength I never knew I possessed.

When I was diagnosed the medications were different. I was started on prednisone IVs and moved to gold shots in the hips along with various other old school methods. Thankfully that is one thing that is changing. There are more medication options than there has ever been and there will be more to come. I am hopeful that in the future there may be a cure. I can say with all of the negative things, I have learned strength, patience, and who and what is important to me. Things that mattered to me before I got sick don't matter to me anymore.

 It's funny all these years of going to doctor's appointments and being a patient. The irony is not lost on me. 

I have changed doctors over the years, some terrible and some wonderful. I'm lucky now to have a great Rheumatologist. Don't be afraid to change if you have one that isn't working for you. I used to be afraid to speak up, then I realized I wasn't helping myself.  

This past year has been the hardest year of my life and there are still things I'm dealing with. Through it all I have learned what makes me happy. My grandchildren bring me extreme joy and the volunteer work I do for the International Foundation for Autoimmune Arthritis. That is the one thing that makes me feel like I'm making a difference, helping someone and I'm working with people who understand. No one there makes me feel like I'm less intelligent. That is a place where we can and will make change happen together by raising awareness and providing support and promoting patient centered research to help improve the quality of life for all of us, which will in turn improve the lives of those who live with us.


 Another bright spot I received several nominations from WEGO health for the 2013 Advocacy Awards. Click on the link to nominate your favorite advocates. 

Last but not least, I realize my post is all over the place, it is a lot like my life right now. Thank you for reading and thank you for being a part of my life.


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Monday, October 21, 2013

Patients for a Moment (PFAM) Change

Welcome to the October blog carnival edition of  Patients for a Moment. This month's topic is change.

There were a lot of amazing and different responses, I hope you enjoy reading them as much as I did.

Here is a portion from Shruti from Lifestyles of the Ill and and (Mostly) Blameless.

Her Post is titled "Everything has Changed."

"To say  “everything has changed” might sound a little melodramatic, but the truth is that very few things are the same as they were before. Every hour of waking time is different from what waking time was like before. Sleeping hours, when I manage to sleep in the first place, are also a whole different situation. My relationships – with friends, family, and potential partners – have all changed too. People think that dealing with a chronic illness means just dealing with the physical illness and maybe its mental effects like the frustrating brain fog that makes me forgetful. Oh and maybe the inconvenience of swallowing lots of medications.. but there’s a lot more to it than that."

Click below to read the rest of the story.

http://lifestylesoftheill.wordpress.com/2013/10/20/everything-has-changed

Rhiann from My Brain Lesion and Me titled her post "A Life Changed Through Illness"

Here is a sneak peek:
 "But how has it changed my life? This is a great question, especially the long-term condition which I live with started during infancy. In this instance the changes have been more subtle; slowly progressing but changes nonetheless. Before my condition started progressing and becoming worse, I had no problems with walking, sure, my legs started feeling stiff and uncomfortable but other than that I could walk fine. Then, the condition progressed, making my balance worse as well as worsening pain and weakness in my legs. And as a result mobility accessories was another change that presented itself in my life – first was my cane, then the crutch and now I rely on a wheelchair when I go out.

Click below to read the rest.

http://brainlesionandme.com/2013/10/12/a-life-changed-through-illness


Mary from Mary-Andering Creatively titled her post "Change Came with my Diagnosis of
Psoriatic Arthritis and Fibromyalgia"

Here is a preview:

"Finally, I went to my doctor. I didn’t go often in those days. I was young and life seemed good. I loved camping, fishing, and walking in my neighborhood. I loved working with my students trying to entice them to read.  I had only one dark cloud hanging over me and that was an abusive husband, but another dark cloud was coming into my life that day in the doctor’s office. She took a look at my x-rays and said with a sad voice, “I am so sorry, but you have the knees of a 60-year-old.”
Those words floored me. How was that possible?  How could I have damaged my knees just by laying some tile on a Saturday afternoon?  I remember thinking maybe I shouldn’t have stayed at it so long, taken more frequent breaks.  I asked her how this could have happened."

          Click Below to read the rest.


The next entry comes from Chronic Rants, with the same site name. Her post is titled "When or if I get better"

Here's a preview:

"So now when I talk about getting “better” I’m not referring to being 100% healthy. I’m just talking about getting back to where I was a few years ago. I’m talking about being well enough to work and date and travel and go out with friends. I’m talking about being able to do laundry and cook and leave the house all in the same day."

               Click Below to read the rest.

                             http://chronicrants.com/2013/08/13/when-or-if-i-get-better


The next Submission is from Iris Carden of Sometimes it is Lupus she titled her post  "Living in Cyberspace"

Here is a Preview:

"I try to do as much as I can on the internet, to save my "real world" energy for things I really want to do. Doing my groceries on-line means I can save some energy and avoid some pain, so I can go out with friends, or cook dinner for my family, or spend time with my baby granddaughter.



               Click Below to read the rest.



Here is Barbara Kivowitz from In Sickness as in Health. Her  submission is titled "When Patient Becomes Caregiver" Here is a preview:

"I am the patient, the ill partner, the survivor. Call me what you will. I am the one with a chronic pain condition. A lot of the time I feel OK and go out into the world to work, buy food, or just go for a walk. Sometimes I feel like broken glass is sloshing around my insides, and I become very quiet while all my concentration goes into seeking a position in which I can feel a bit of relief."



The next submission comes from AutoimmuneGal. Her post is titled "Achieving My Goals...On the Football Field." Here is a preview:

"I have found that adaptability is a good trait to develop (if you aren't already blessed with it) when you have autoimmune disease. I realize it's news to few of you but, for most of us, having a chronic illness means that you have much less control over your life. How you feel varies on a day to day basis and making plans in advance can be futile.

I have had to work on becoming adaptable. It's not in my nature. I like to set a goal, apply laser focus, and accomplish it within a specific timeframe. If only life were still so simple now. Becoming adaptable has meant finding new interests or enjoying my previous hobbies in different ways.  I used to play sports, exercise, go to the gym. These days exercising no longer means competitive sports or going for a run and pushing myself to the limit. I'm lucky to exercise at all."


Click Below to read the rest.


This submission comes from Abigail Cashelle her site is called Hidden Courage. She titled her post "PFAM How has Your Life Changed."

Here is a preview: 

"It’s a really hard question for me to answer. I got sick around the same time I came of age. I first started noticing symptoms around my second to last year of high school but didn’t start seeing a physician until the summer between high school and college. It’s a period of life where a lot of things are changing. So, sure, illness changed a lot of what that looked like. But it’s hard to pinpoint exactly what’s different."

Click Below to read the rest



Thank you to everyone your posts are amazing and inspiring. I hope everyone reading them enjoys them as much as I did.

One final note, you might have noticed my post is missing. My life continues to be crazy, it is my hope to have my submission up today.



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Sunday, October 6, 2013

Patients for a Moment (PFAM) Call for Submissions!

Hi everyone! I'm happy to be hosting the October edition of PFAM. This months topic is change. This leaves it wide open for interpretation. How has your life changed since your diagnosis? How have you maintained your relationships? Maybe you don't want to delve that deep, you could go as simple as how changes in the weather make you feel.

 Having a chronic illness changes your life in many ways both good and bad. I know there has been plenty in mine. I look forward to reading everyone's responses to this topic!

Sorry I'm late in posting this, so if you could get your submissions to me by midnight on October 15th that will be great, maybe even a little longer if needed. 


UPDATE: The deadline has been extended to October 20, 2013 

You might need this too!
lifewithraisapain@midco.net

Please include your name
Your Blog Name
Your Post Title
Your Post's URL


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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 :)

The Pink Momma

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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