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.


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.


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.


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 

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