Mother's Day when you have RA

I think that mother's day has finally ended this year for me...most mom's have 1 day devoted to them. I have 3,4, sometimes 5 days depending on weather,  RA flares, insomnia, the list goes on. I honestly can't remember the last time I had a "normal" mother's day, Birthday, holiday....well any day. This year was no different. 3 daughters trying to outdo the other making me cry....every year...every holiday. They are a bit competitive and creative when it comes to mom days...lol So on Sunday, I was treated to brunch by my husband, a beautiful poem and heart fingerprints from daughter number 1 and granddaughter, a Facebook post by daughter number 2, and a beautiful poem to music by daughter number 3. Well, they all made me cry...each one air fist pumping their accomplishment..thinking they topped the other. Then lunch, cards, and a beautiful necklace yesterday from daughter number 2 and grandson number 2, brought tears to my eyes. Today, daughter number 3 gets a package in the mail...and hands me a small box.
A little background here...4 years ago, daughter number 3 had just turned 15. She wrote me a poem about spoons. (I'll attempt to add the picture at the end of this post) She attached a teaspoon from my kitchen drawer to the poem. I put it in the bottom of my grandfather clock (another surprise for a birthday and you guessed it...I cried..lol)
In the box today is a spoon..."You are Awesome". She asks if I kept her poem ( silly girl, I've kept everything my children have ever given me...even rocks..lol) I hand the small paper to her, and she replaces the spoon.  I read the poem she wrote me again...no tears, but a thankfulness and realization of how truly blessed I am to be a mom...Their mom. All 3 of my children and my husband get this disease. Trust me it has not always been hearts and rainbows...it has taken lots of talking, charts, diagrams, tears, and fears to reach where we are today. We still struggle with this at times, because this wretched disease takes its own twist and turns. We have all changed. But one thing hasn't, my love and devotion to my husband and children. They have all become advocates for RA/RD. And that folks is the best gift I could ever be given...tears or not!!!
Wishing you pain free days and love beyond measure. "YOU ARE AWESOME"
XOXOXO Lori ❤❤❤❤❤❤❤
#PachicknwhispeRA #ReDefiningRA #Motherhood #family

It's all about you...Love, life, and priorities.

Yesterday I started a blog about another person who reached out to me after being diagnosed with RA. But I didn't finish it. I prayed last night as I do every night for God to use me where he needs me. So, as I prayed, forgiving those who don't get this disease, praying to be able to guide those who reach out to me that do, I realized 2 things.

1. Since being diagnosed with this disease, my life has taken a total different direction than I had planned. In spite of this illness, I have been blessed with meeting a ton of people all across this country who have one goal in mind....A CURE. I have been fortunate to travel some and see things I might never see. I've eaten foods I might never eat or try. I've laughed, cried, been scared out of my mind. But 3 things have remained constant, my faith, my husband and children, and my desire to make a difference in this life.

2. The second thing I have learned is that people are very judgemental. This disease brings home the realization that my time in this world is really limited. My priorities have changed so much since this disease diagnosis. But that really hit home in my last trip for my ambassadorship meeting.

So much information from reliable sources was presented. Some of it I already knew, alot of it was shocking and scary. But, the most important thing I learned is, I have changed. Now, sadly I also realized after coming home, that there are  people  in our extended family who do not realize that. Not only that, honesty seems to be something others can't give.

I am certain that others have also dealt with or are dealing with this very issue. I belong to a support group online, and some of the posts relate to the topic of family who have no idea what this illness is, the toll it takes on our minds, bodies, and spirits, and then there are the family members who are like the ostrich putting their heads in the sand hoping you will just stay away.

I was told that someone whom I was truly hoping to see, was worried the visit would focus on drama and unhappy things. But you see, I know my time is limited, I know I have but these brief moments in time to love, live, and learn. So, that time passed and sadly a great opportunity to visit was lost, and will probably not be an option again. It's a loss that hurt, but I have to keep moving forward.

It's difficult for people to understand that I am a different person now. It's very sad, because time passes and those moments to live, love, and learn are closing quickly. I have other people, places, and things to focus on. So, as I move forward in this crazy rollercoaster of life I've been given, I will continue to work diligently to spread the word about Rhuematoid Arthritis, I will realign my priorities as needed, and I will keep hoping for a cure.

To those who read this blog...I leave you with this advice, Love those who are present daily, realize that actions do speak louder than words, and most importantly...Love yourself enough to say it's okay to be different and move on from those things that do not make you happy. This life is way too short. They are missing out on something really special...YOU.

Much love to all of you. To those who choose to ignore or love you on your own terms....You're missing out on some awesome people and their stories.
😍😘❤❤❤❤

How far I've come....

Last night I got a frantic phone call from a friend....Those dreaded words I heard myself just a few short years ago....Rhuematoid Arthritis. And her questions began. What is It? What does it affect? Am I going to be disfigured like my client who had it and passed away a few months ago? I'm scared...My Grandmother had this. They took 9 vials of blood. They are testing me for RA. And I let her talk...let her get it all out...let her let it sink in as she was saying those words. We talked for over an hour. I talked her off the first cliff, reminding her that 9 vials of blood means they are checking other things. Don't put the cart before the horse and let's see what the doctor says. What if it's RA? What will I Do? I told her, you will see my rhuematologist who is truly amazing and understands our fears, anger, sadness, tears...I assure her that I will be here to listen, love, laugh, and get pissed off with her at this disease if she should have it. She felt a bit better, but still is worried...understandably.
I spent time after that call, thinking about my own journey...fears, tears, anger, and sadness I too had and some days still do. I thought what if I had a friend that I could call and talk to for an hour, who would calm my fears. I did not have that one friend, but I do have a spouse and 3 daughters who have lifted me up, dried my tears, held me as I sobbed. But I realized I have that and much more...I have another entire family at Cresendio Bioscience,  Continuum Health, and my fellow Ambassadors who live this life everyday like I do. Recently we gathered, and I learned so much more about this disease. It isn't that you are diagnosed and that's it, NO,  it changes daily and you never stop learning.
I have a country wide support system that is just a message away. Yes, this disease robs you of so much and I would never wish this on anyone. I believe God places things and people in your life for a reason. I didn't want RD, but it has given me the chance to make a difference in one person's life, to listen, to encourage, to understand. May is arthritis awareness month....I have a feeling I'm going to have the opportunity to make many aware. 🤔😁
May your days be filled with uplifting thoughts and many blessings beyond your imagination. We get this one life, no matter what, use it.
Love to you all. ❤❤❤❤

Them Spoons...tink....tink....tink

I read an article the other day about a woman who took the spoon challenge...so I thought let me write about this. If you want to understand a day in the life of someone battling Rhuematoid Disease, fibromyalgia, lupus or any other disease that is attempting to destroy your otherwise once upon a time healthy body, go to your kitchen while reading this and put twelve spoons in your hand. .....I'll wait....do you have them yet? Oh you don't have 12 spoons? Well usually I don't either, but that's okay. Now sit down and get comfy as I take you through my day (just to clarify, not everyday is the same...as a matter of fact, no hour is the same. Also, not everyone has the same days or hours as I do) now on with our day.

5 am - the dreaded alarm goes off. And so it begins...before you dare try to get out of bed, you have to remove all apparatus on your person...braces, heating pad, face mask if you have one. Then you begin gentle stretches...trying to loosen up those joints and muscles that have finally calmed down and let you sleep for 3 or 4 hours. If your lucky. Slowly you get up and out of bed. 1 spoon please. 

5:30 am - Now you decide what your wearing today...loose and light cause I might have a sweat day, or heavy and warm cause I'm already freezing without my electric blanket, comforter, and quilt. Make the bed? Hahahahahahaha not wasting my precious spoons on that. Any buttons or zippers can be a challenge, so forget those. Bras and socks are hard enough. 1 spoon please

5:45 - finally make it down 14 stairs. Make it to the couch. My husband ( thank you Lord for bringing us together) brings my coffee and helps me get my socks and slippers on. You guessed it...give up spoon number 3. and we haven't even got started today.

6:00 am - locate the snacks you know you bought for hubbys lunch, just can't remember where you put them. Oh and since the bathroom is right off the hall, better take advantage. Now, it's time for hubby to leave. You see the concern in his eyes, because he has to go to work. He worries that you'll try to do too much, that you will wear yourself out and get sick. You worry about him worrying and wonder how long he can deal with your lack of being able to do all the things you used to do. You go back to the couch, you think too much, you find your depression overwhelming when these thoughts over come you. Spoon number 4.

You wake from sleep that neither was restful or restoring to realize you have to get your meds in you. The ones with all those warnings about all the other things you can get from taking the Medicine to stop the disease that has changed your life. And you think the other shoe dropping....the med stops working. Then you start over with the guessing game, the approval game the insurance company plays, new side effects...oh sure, you don't think about it 24/7, but it's always there in the back of your mind.  I'll be needing spoon 5. Thank you. 

You forgot to eat...so you go back to the kitchen praying there is something simple to eat. usually yogurt and fruit. on good days, you can make eggs, toast, or cereal. After you eat, you realize you forgot to feed the dogs. Your daily companions who cuddle and snuggle with you, because they understand. Let's hear it for spoon number 6...halfway through and the day hasn't started yet. 

9 am - in the car to take your last child to school or work. She drives there, cause she knows your wrist and hands hurt. Thank goodness for pharmacy drive through, because you forgot to fill everyone's medicine and called it in at 8, begging them to have it filled by 9:30. There is a problem with filling your meds...they are waiting on a call back from the Dr or the insurance company...come back later. So you go home. It's now 10 am. Spoon number 7 is up...and it's not so lucky. 

You get home and have to remove coat, hat, gloves, boots...oh yes it snowed again and the temps are in the 20s. slippers on, head to the couch..nap time. Spoon number 8. 

You wake in time for lunch...please let there be leftovers..nope. Now you have to figure out what to eat and prepare it. But before that, you have to do the dishes piled in the sink. Spoons 9 and 10 come on down!!!!! 

Eat lunch, fold a load of clothes, try to read a book, but the fog and pain won't allow you to focus. forget crafts, your hands have a mind of their own now. Your body dictates who, what, where, and when. Hubby calls to check on you. You reassure him you are fine (Your not, and he knows it too, but you pretend) He offers to pick up dinner for tonight, to help. You are okay with that. Home cooked meals are sometimes overrated...besides, they really don't want to eat what you do....no fat, no gluten, no red meat, no dairy, no fish, no fried.
Oh spoon 11...don't be shy. Your on deck. 

So, you have one spoon left...and you have to pick up your child, laundry needs done, there are more dishes, the sweeper needs run, bathrooms need cleaned, dinner needs cooked, and you need a shower. So, you give up. You enlist help when you can, and the rest forget it.

Eventually you only worry about getting up, dressed, and eating. The cleaning help starts Monday. The struggle to deal with the depression all this brings day after day is almost too much to bear. You pray, you cry....sometimes you just give up. But tomorrow is another day...another 12 spoons. Your priorities change. Paper plates and plastic forks are the new China. Takeout menus are the new reading material for your family.

Now you have a glimpse of what life is like for an RD warrior. I am lucky that my husband and my children pitch in to help. But the children have jobs and families of their own, they can only do so much. My husband is very tolerant of the clutter and mess. I am not so much...lol I miss the old me, but I am learning to accept the new me somedays. The cleaning help really does start Monday. A dear friend who understands my mess and how behind I am in housekeeping and does not judge me, but hugs me and assures me it will be fine. To my mind another defeat...But to my body, a time to refresh and save a spoon or 2 for other things like my grandkids, or dinner out, or a shower without needing a nap.

To all my RD brothers and sisters...I pray for you all everyday. I love you and understand your struggles. Keep fighting, keep hoping, keep resting. ❤❤❤❤❤❤

What I want you to understand about Rhuematoid Disease

It's a multifaceted disease that affects everyone diagnosed in different ways.

I am lucky.....I read so many stories of poor treatment, lack of family support, abandonment by family and friends. Some of these stories simply break my heart. But then, I realize just how blessed and fortunate I am. Reaching that statement was not without a lot of fear, tears, anger, frustration, and education.  my husband is my biggest supporter. Without him, I think I would be one of those very sad stories. My children  and grandchildren are my reason for getting out of bed everyday. I have made some truly awesome connections with others and have been given opportunities to make a difference.

You sleep ALOT. You are in pain ALOT. You give up ALOT of your life style. You take ALOT of medicine that does crazy  things to your body. You gave up your job, your garden, ALOT of your crafts, because you had to reorganize and reset the priorities in your life. You live everyday waiting for the shoe to drop, one of the meds stops working, you develope one or more of the frightening side effects of the medicine. You live with the knowledge that you will develope other diseases that affect major organs, you realize your life span has been shortened by the very diagnosis. You give up who you were and attempt to accept who you have become.

All of this while many around you give you advice you have heard thousands of times since diagnosis. Go vegan, gluten free, exercise more, take vitamins, and the one that really hits hard..."Arthritis..oh I have that..Everyone does." Yes, I have that type too. But RD is different.

Are their others worse off than you? YES. Their are those who were diagnosed as children, and have spent their entire lives fighting JRA (juvenile Rhuematoid arthritis) These are the ones you sympathize with the most in this RD world, because they are the truest form of warrior. They have been fighting their whole lives and continue to fight into adulthood. They are the experts in this fight.

So, my best advice to those who know nothing about this disease is to educate yourselves. We will even help you. Continue to invite and include us in your lives, we may not be able to come to every event, but we will do our best. Please understand that we are fighting a battle that has no cure, that can cause other diseases, and that we try our best to put on a smile everyday. Don't compare our battle to getting old, being lazy, or needing to eat healthier. If it were that easy, the disease would not exist. most of all, just love us. We wish we could go back in time and bypass the day our world changed, but we can't. We have been dealt a life we wish on no one, but embrace us, embrace who we have had to become. I it will make a huge difference in our lives and yours.

Much love to my family, friends, and medical team who gets it. 💖💖💖 I am lucky to have you all. To my fellow warriors, fight on, I pray for you everyday, I love you all. 💖💖💖