Day 7: #HAWMC 2016 *WEGO asks: Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition. Advocacy in the realm of autoimmune disease was a fluid and natural process for me. My daughter, now 26 years old, was diagnosed with Juvenile Rheumatoid Arthritis at the age of 2.

What is psoriatic arthritis? Also called PsA, psoriatic arthritis is a long-term condition that affects your skin on the outside and your joints on the inside. Mar 05, 2007 Show more Show less. Whammy All New Press Your Luck Ed James Janie - Duration. Good Mythical Morning S9 • E62 Amazing Game Show.

I had spent her young life learning about rh factors, ana tests, and a plethora of other acronyms and abbreviations pertaining to her disease. When Alesha was diagnosed, I felt incredibly isolated. It was such a difficult place to be because I struggled with undiagnosed clinical depression. (It would be 8 more years before I realized that diagnosis), but my little girl needed me, so I stepped out of that random and very dark place to tackle the beast called Arthritis(JRA). Such a motivating factor gave me a feeling of power like I could divide and conquer anything! The world wide web arrived one year after my daughter was born, but it was certainly not the internet we all know now, and it wasn't available to me at that point anyway.

I researched by visiting hospitals and doctors, joining the Arthritis Foundation, and calling other parents whose children had JRA. So, I gathered and shared the information with anyone who would listen, especially other moms. Fast forward to 2014, and JRA is now considered Idiopathic and called JIA. I am diagnosed with Psoriatic Arthritis, followed by Fibromyalgia soon after.

The advocacy for these conditions began almost immediately, although my voice has been punctuated by the symptoms and struggles associated with my conditions. I loose ground sometimes, but always come back. There is a consistent voice in my head that finds its way back every time.

I believe that voice is my daughters; after all, she was my muse for advocacy. #HAWMC #WEGO #JIA #PsA #Psoriasis #Fibromyalgia #ChronicPain #GrammiesDoubleWhammy * is a network of over 100,000 of the most influential members of the online health community. We are bloggers, tweeters, pinners, and leaders of Facebook pages — we are the empowered patients that drive the healthcare conversation online, across virtually every health topic and condition. As my husband facilitates, I have been adjusting and attempting to modify my attitude. May 5th marks one year since my Rhuematologist officially diagnosed me with PsA. The Fibromyalgia determination came just two months ago.

Being pronounced with autoimmune diseases is kind of like running a race without a finish line. I spent a long time trying to find out what was causing the pain and fatigue, only to discover there would never be a means to an end. Thus begins a process much like grief: • Denial - Much like when I was diagnosed with depression, I just shook my head when it began to soak in that I had an autoimmune disease.

So much so, that I refused to take the meds and began reading everything I could get my hands on that would discredit the diagnosis. No, thank you. Download One Piece Episode 1 10 Subtitle Indonesia. A chemo medicine for arthritis?

Are you crazy? The realization that my doctor might be correct in his conclusions just spiraled into a slow burn of fury. • Anger & Bargaining - Infuriated even! When my now adult daughter was diagnosed with Juvenile Rheumatoid Arthritis at two years old, I felt so helpless. Negotiating with God, I asked Him to give me this horrible suffering and take away her pain.

Little did I know, I would find my way down a similar path as m y baby girl. Not only had she suffered as a child, she continues to fight this brutal disease with infusions every four weeks. I join her sometimes, depending on scheduling, as my infusions are every six weeks.

I felt bitter and isolated with my situation. Why had God done this to my family? The word Karma even entered my brain. My irritation blended with sadness and suddenly the world felt so heavy. • Depression - I have lived with it my whole life. Hiding in the wings.

Smiling in public. Psoriatic Arthritis brought depression to a new level. The fatigue made it easy to slowly simmer and stew in the pain.

I wore a pathetic cloak of hopelessness that would overshadow the positive inclination inside of me screaming to get out. It was cold outside. I could not accomplish much of anything. Elementi Di Economia Politico Palmeiro Pdf Converter. I felt guilty for doing nothing. Then, a miracle.

• Hope - I was blessed with the resources I needed to pull myself up. Like a warm, cozy blanket, I felt wrapped in His love and this comforted me so much.

My GP worked with me on the appropriate medicines to cope with the darkness. My therapist shifted my being by suggesting I focus on change and all that it brings because it is all we ever really can rely on.

In an attempt to stop the joint damage I am experiencing, my Rhuematologist has pushed to get the best medicines approved by my insurance company. Finally and most importantly, my husband, Steve has been my rock. At some point in this mess, I realized I had my own posse. A tangible group to reach out to for support. The big step was plugging in.

The help is there. • Acceptance - The biggest and hardest part of all. Acceptance is a daily walk. My perspective has changed.

My illness has not. It still ravages my body every minute.

The difference is my coping skills have changed. My therapist, Elaine, would be so proud! • Be kind to yourself. You deserve gentleness in your life, so begin with kindness.

• Life is not perfect. Your house won't be either. I have relaxed my standards tremendously in this arena. I try to do one significant chore per day.

Clean the toilets. Vacuum a rug. Steam a section of floor. Sometimes making a cup of coffee is truly all I can do and that's ok. (refer to number 1.) • Make life more efficient. Chores will be harder. Buy gadgets that make them easier. Buy the chopped onions, green peppers, mushrooms (or whatever you would normally chop) from the freezer section.

Survey your home and consider the modifications you or your spouse/friends/family can make or help you with to make life run more smoothly. • Ask for help. This one is tough. Just humble yourself and do it. My daughter has JIA. She went to her management team at work and explained her issues.

They provided her with a chair at the customer service desk! Do you have teenage kids? Built in help! Have them invite their friends over for pizza. Provide the buckets and sponges for them to wash your car. Have one of them sweep the porch outside. Be creative and consider the offers people have already made that you may not have accepted yet.

Whatever you need to feel accomplished without utilizing your precious energy. • State your case.I just put it out there. When necessary, I tell people I have three autoimmune diseases that rob me of my energy and mobility. I receive infusions in an effort to ease pain and stop damage. My energy is precious at this point in my life. Anyone who gives you grief instead of support should go to the bottom of your give a shit list. They are zapping your precious energy.

#Psoriasis #PsoriaticArthritis #Fibromyalgia. I remember sitting with my counselor, Elaine, on a bitterly cold day, during the winter of 2014. I had been experiencing ankle and foot pain for almost a year at that point and I was not handling things very well.

Since I had yet to be diagnosed with Psoriatic Arthritis, I was confused and frustrated by my physical limitations. I was no longer working and I was completely exhausted all of the time. My big accomplishment of the day was getting out of bed, getting dressed and making it into Elaine's cozy office that morning. Sitting on her couch with tears in my eyes, I described the daunting task of housework, especially my struggles with laundry. Since the washer and dryer are in the basement, I had to gather everything from the main floor, bring it downstairs to be washed, dried and folded and then carry it back upstairs. Living in our home since 2003, this had never been a problem for me. Now, it was literally impossible.

I felt guilty. My husband would get up at 3:45 am and go to work, come home, take care of everything outside the home, fix and maintain our vehicles, and now he was coming home to piles of dirty laundry, a dishwasher full of dishes and a house in disarray. I felt like my whole world had been turned upside down. I would toss the laundry down the stairs and hobble down step by step, so at least I was attempting to maintain my home. It would take me all day to plan and organize dinner. I didn't want Steve to know chores were so difficult for me.

As I explained my woes to Elaine, I felt like I was speaking about someone else. Her words resonate with me to this day. Change is inevitable. People experience it everyday.

Accidents happen. Diseases are diagnosed. Things can change in an instant. Adjustment times are necessary.

Be kind to yourself. Ask for help. May 15th will be a year since I was officially diagnosed with Psoriatic Arthritis. My Rhuematologist is still trying to find a successful treatment for me. I am still tired and my home is certainly not the organized and clean home it once was. However, I have begun to look at things differently and my husband has even begun to adapt our home to make things easier for all of us. One week before my third Remicade infusion, I went to see my Rhuematoligist.I wanted to ask him some questions about my Psoriatic Arthritis,and the length of time I may have to wait until the infusions began to work.

I explained that I was experiencing more pain in new places, including my left elbow, arm and shoulder. The pain was chronic and overwhelming and I couldn't understand why I was getting worse. After an extensive overview of all my symptoms, my doctor examined all of my joints, while asking about the specifics along the way. He touched certain points on my neck and back that just about sent me through the roof!

This was a bit alarming to me. Although I had been experiencing overall pain and malaise, I was stunned to realize those certain points were so painful. Folding his arms, Dr. Patel stepped back and paused. His diagnosis saturated my being with a cloak of misunderstanding. How is that possible?

I already have two autoimmune diseases that defraud my quality of life. I was aware of how debilitating Fibromyalga could be. Thoughts of more pain and struggle, along with the burden I would lay upon my family literally had me numb. My very calm physician was concerned, yet absolute.

He explained that Fibromyalga was difficult to diagnose but very real. Evidently, it is necessary to have at least 11 of the 18 tender spots, as well as a prolonged duration of pain before diagnosis is considered. My pain had gone on for so long that I just assumed it was all from Psoriatic Arthritis. I knew I experienced different types of pain. Stiffness and constant pain (#PsA).

Shooting and burning pain (torn Achilles tendon and Plantar Fasciitis). Overall chronic tenderness and soreness (Fibromyalgia).Who knew each type was coming from a different source?! Patel confidently prescribed the drug Lyrica for my pain. It took me a week to consider the drug, and after much research I succumbed.

I will never forget my first night sleep after taking Lyrica for the first time. The pain had decreased at least 50% and I was sleeping like a baby. The second night?

I am almost embarrassed to admit that I slept until 2 pm the next afternoon. I am on my fourth day of this drug and maintaining a neutral stance. I feel positive and more able to do things. I am fully loaded on Remicade now that I have passed my third infusion. I am patient as I wait for the Psoriasis and Psoriatic Arthritis relief. My infusions will now be in 6 week increments. I am beyond thrilled with the relief Lyrica has offered me so far, and I am taking it one day at a time now.

If there is anything I have become certain about in the last several years, it would be that things change. I no longer dread that statement. Change has brought about some unexpected life twists and turns, but I must say the positive outweighs the negative. I may need a bigger boat to endure this passage, but I know I am not alone. None of us are. We are surrounded by plenty of resources and allies if we just tap into them.

For this I am grateful. The rough waters are treacherous at times, but a lighthouse always shows up eventually. Today is infusion day.

A biologic drug that is supposed to ultimately stop pain and joint damage. We shall see. Thus far I have used methotrexate and Humira injections to no avail. I began Remicade in December of 2014, however my therapy was stalled by viruses I had in January. So, now we begin again. Hopefully I will be able to maintain a schedule of Remicade infusions that will allow the drug to actually work. Here's why I want it to.

It has been a difficult winter. December and January (even into February) are cold dark months. There is less sunshine. The cold envelops a body in such a way that people with normal joints, tendons, and ligaments can feel stiff and uncomfortable.

Add psoriatic arthritis, or any autoimmune disease for that matter, sprinkle in clinical depression, and you have a mixture of ingredients that whip up an unsavory recipe. I have felt so isolated. Blogging and posting on Facebook is a constant reminder, however, that I am NOT alone. Feedback from those of you who read what I post fuels me in ways that surprise me sometimes.

It is helpful to realize that there are people out there searching for answers. If someone happens upon my posts and are led in a direction of positivity or helpful resources, then I have made a difference. Let me tell you. There is something very powerful in realizing you've made a difference, when you struggle to move, let alone find purpose everyday. Health issues have a way of overshadowing everything you do. I work constantly at keeping my head above water. Some days it is just plain easy.

Other days, well. I am grateful that I have my faith. I have realized a myriad of truths, during this process of finding my way with an autoimmune disease. The first one, and probably the most important, is being kind to myself. This proves to be a necessity. Not a luxury. Maybe even the single most priority I should have.

The world may suggest on a daily basis what an appropriate day may look like for me. Simply spoken, I no longer care.

I define my life and live by my own rules now. Letting go has been my first kindness to myself. I am finding this becomes easier as I go. I work within my means to make life easier for myself and my family. Our lives are not conventional and that's okay.

Today's kindness? After a shower and another cup of coffee, I will drive to Atlanta to receive my infusion. No other expectations. The first infusion wiped me out and that's OK. My husband and grand daughter will grab a bite out because they certainly would not expect Grammie to cook tonight.

I might stop at red box and select a movie. Maybe pick up Chinese. If I accomplish anything else, I will consider it gravy. My high school friend, Valerie, recently posted a comment on my Facebook page. She suggested that I was brave for sharing my story. I had to pause. When I think of bravery, I see images of firefighters running into burning buildings to save people.

I am certainly not brave. Sara Bareilles sings a song titled Brave. It is a favorite of mine that I have loved, since the moment I heard it. But I don't believe I ever really listened to what she was trying to say in the lyrics.

After contemplating Valerie's post, and revisiting the song and its video, my interpretation of her point is much clearer. And at such an important time in my life. Speak your truth and be brave. I guess I'm brave. I literally feel like a new woman. Thank you, Valerie! Sharing my story and vulnerabilities is courageous.

I know this because stories about people who have conquered their demons have resonated with me in a remarkable way. Telling a personal story exposes your pain and hardship. It's like being naked in front of a crowd by your own hand. Why would someone do such a thing? Because we are changed by one anothers experiences and it is incredibly liberating! I am so inspired by this recent realization that I would like to celebrate!

Once a month, I will seek out an extraordinary story and write about it in my blog. I don't believe a pattern of subject matter is really important here. Simple or complicated, it doesn't really matter.

I am simply looking for someone speaking their truth and finding their brave. I can already think of several people and their stories to share with you, but you are welcome to share ideas with me! I would be so grateful!

Here's to finding our Brave!