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. 💖💖💖

Depression, frustration, exhaustion

So, what does the title Depression, Frustration, and Exhaustion have to do with RA? Imagine waking up one day and your life has completely changed, or better yet, it takes it's sweet time strolling throughout your days, slowly eliminating one thing after another. That is RA/RD. As time passes, you realize that things you used to take for granted are becoming more apparent as you struggle to get through your day. Waking up becomes a chore unless you have 12 or more hours of sleep, unless of course you are going through the sleepless phase, again.

You start to suffer from Frustration first...once you worked 12 hour days, cared for your family, cooked, cleaned, canned from your garden. And slowly you realize that one thing after another goes because after working just 8 hours, you must nap. Dinner?? Hope my family doesn't mind takeout again, sweeping can wait. Garden? Now containers because you can no longer keep up with weeding or even watering.

Next comes Depression...can't keep up with life's demands, can't fight the tiredness. Tired of being tired. No interest in much of anything. This is life? You begin to think of what was, what is, and sadly what will never  be. Life just doesn't look happy anymore. Staying in your bed is appealing. Dishes pile up, dust bunnies take on a life of there own, and you just have no interest in anything anymore. Oh yes Depression is a scary, sad, lonely place. No one is harder on you than yourself. Everyone around you has no idea, because you smile on the outside.  And the few people you let in, worry about your state of mind. Sometimes making it worse because they love you so much...How can you...I see myself as your burden.

Finally Exhaustion...If you sleep too little or too much, you're tired. Have a good day and clean the kitchen..finally finding your sink, the next day your exhausted. And the day after that. It seems to never end.

Of course there are days when the planet's and stars align. On those days, living with RA/RD isn't any easier, but it is more tolerable. Surrounding yourself with others who understand your highs and lows, having access to help both virtual and real, and having family who are understanding and supportive are all key to not suffering in silence. It's okay to visit sadness once in awhile. It's okay to get angry at this disease. It's okay to miss the old you, even mourn the loss of the old you. Just don't stay there. Dry your tears and pick yourself up. We are strong, we are warriors. Gentle hugs today and much love. 🐔🐓🐥

#RABlog day 4 - Hobbies - or collections as my best friend likes to call them

I like to think I'm a crafty person. I have tried many different types of crafts...aka hobbies..lol Although, my family and friends see this a bit different, they kindly refer to this as hoarding...lol

Of course I'm only "hoarding" until someone needs something for a project, a craft etc.

Oh I have had my phases...flower arranging, sewing, crocheting, knitting, needle work, cross stitch, and then there was my painting phase...oh yes, but then came clay, baking, cake decorating...thus far none and I mean not one of the above mentioned hobbies has made me any money...in fact, they have caused  my checkbook and credit cards to cringe.

Now I am fortunate to have a spouse who is indulgent...never complaining, never questioning the many bags coming in from Joanns, Michaels, Pat Catans, and occasionally Hobby Lobby. Nor did he say nary a word when we attended a couple auctions and became the proud owners of not 2 but 3 or 4 truck loads of someone else's "hobby/hoarding". I might have a slight problem.

Remember that my mind set has been and still is, they are going to find a cure!! So, I keep buying. On my best days, I can work on projects that I have, they may take 3 or 4 months to finish, but hey I have time.

Then came my chicken hobby. Now this was NOT my doing. My dear sweet spouse wanted chickens...I did not, that is until our neighbor delivered 4 fluffy tiny balls of cuteness in a box one day. I was hooked!! So my husband built my tiny fluff balls the Taj Mahal of chicken coops. And so began my hobby/hoarding of feathered friends. My husband again is indulgent...not 1, but 3 coops later, 6 different breeds, and many more fluff balls, he said "enough". We had 30 plus chicks ranging from eggs being set on, to 5 inches tall, to our big boy who tipped the scales at 10 pounds. (Might have been just a few too many treats)

Alas, my hobby/hoarding of chickens came to an abrupt end this year when a varmint  got inside our big coop and one by one stole my babies. The sole survivor was Faith, who only has one eye (lost the other in a racoon attack). Faith survived a fire and multiple attacks over the years. We rehomed her with a friend who has many chicken friends. 

Faith is a survivor. Just like myself and the many others who everyday fight the battles of disease. We have Faith in our doctors, family, science, and friends. We have Faith that we will find a cure. Perhaps Faith the blind chicken has taught me the most out of all my hobbies...keep going, keep fighting, keep having blind faith...

I am #RedefiningRA one day at a time, one hobby at a time.

Gentle hugs and much love.

My partner in sickness and in health. ❤

What does one do after receiving a diagnosis of RA? Well, first you Google it, study everything you can about it, and then brush it off, tell those closest to you that it's no big deal, you will be fine. Then after you are done reassuring your children that you will be around until your older than dinosaurs ( depending on their age, they may think you are there already and begin to compare you to the age of dirt...lol) And then it happens, just you and your spouse are finally alone. Your mind races with thoughts of, how is this going to work, will they stay, will they still love you, will they care for you on your darkest days...

This is my story of my journey with RA and the effects it has on your partner( at least my partner) The first time you have to admit to your partner that this dreaded disease is never going to just go away, like the flu or a cold, that it is going to impact your lives until death...it is like being slapped into reality. It's scary, painful, emotional...all those things you hold inside when putting on the good front.

After raising 3 daughters (2 which were part of the package deal), being married to a headstrong wife, and owning both a female cat and dog, most people begin to sympathize with my husband. If they only knew the real obstacles he has had to face in our short 20 years together, they would paint an S on his chest and give him a cape!!

About 2 years into our life together, I began to suffer from extreme fatigue. I was barely able to stay awake on the weekends. We thought it was from having had a late in life baby, moving to a new home, sleepless nights, and working 70 plus hours a week. Not to mention running for the older girls activities. I went to see my pcp. After many tunes of blood, multiple scans, x-rays, pokes, prods, and jabs...I was diagnosed with Fibromyalgia.  I have no idea what this is..so, I spent that afternoon scouring the Internet looking for any and all info on this unknown life robber.

I sat my husband down and explained to him the best I could what all this craziness was. Unprepared for the response I got, I cried. He looked me straight in the eyes and said, " I'm not going anywhere. We can handle this." And life went on. Life continued to be crazy. I began setting an early bedtime for myself on the weekends in hopes it would help with the tiredness that consumed me. I drank coffee, pepsi, tea..anything that would help. As time went on, we talked less and less about the illness and focused on living.

When I was diagnosed with RA, I just brushed it off as being like Fibro. Trying to hide the real facts and pain from my family. How could I explain this to my husband....tell him that the " in sickness and in health" part of our vows was going to be tested to the extreme. But he knew me better than I realized. He asked questions without my knowledge seeking answers from friends, Dr's, and yes, even our own daughter who is a nurse.

Living with me has not been easy...trust me I know...lol (see above mention of S and cape...lol) My husband has been a rock. Telling me not to worry about the house, the dishes, the laundry...ummmm hello...dust bunnies the size of small boulders under the couch, dinner served on paper plates, and laundry ( not even going there...he is a guy after all) He has seen me at my lowest...and still loved me. Even when I was angry at myself, this disease, the whole life changing situation that consumed my every waking thought, my fears, my tears, my hate of this ugly illness that changed me from who I was to who I am....not once did he ever think about leaving, walking away, giving up.

I know how fortunate I am...how lucky I am. I have been blessed beyond measure with my husband. I have read story after story of partners who have walked out because things are too hard, they can't handle the illness, the changes. I am one of the lucky ones. But if you ask my husband, he will tell you he is the lucky one, that I saved him. May you find that special partner that loves you as you are, not as they wish you were.

Much love to those who read this. Gentle hugs and prayers for a cure.

Lori ❤❤❤❤

Am I nuts? Nope....

December 16, 2013....the day I will never forget. The day I finally learned I was not crazy, but that my symptoms were in fact something real. Before I get into all that, my name is Lori, I am a wife, mother, grandma, aunt, sister, cousin, niece, daughter, and friend. I have RA, Fibromyalgia,  Raynauds syndrome, osteoarthritis,  spinal stenosis,  and a host of other things going on...my body is at war with itself.

 After being told for years my symptoms were in my head, they were from aging (38 is aging...lol), they were this problem, or that problem...your not eating right (I can actually say that is true), your not active enough (3 kids, husband, home, full time plus job, animals...not busy enough? Please), your going through the change of life...not sure where that one came from and facts it was based on. 樂樂樂樂樂樂樂

All of this followed by take this pill with this pill, make sure you eat, get this bloodwork done, wait have an xray, no we need another blood test, mri?? Oh you have a perfect brain....uuugggghhhhhh 

Then I met my Rhuemy...the appointment happened, not because a doctor told me to go, no it happened because my oldest daughter, who had witnessed many of my bad days, came home from nursing school one day and said," Mom, I know what you have and you need to see a rheumatologist." And as fate had it, my girlfriend who suffers from Fibromyalgia had been to see this rheumatologist 3 weeks before and said how wonderful she is, patient, kind, understanding. And so, I made the appointment.  ⏰

So, this is the beginning of my journey. In my next post, I will share my first appointment with you and the beginning of my lessons learned thus far, and just how chickens played a part in my therapy.

Many blessings to you who read this. Much love to those who are in my circle of support. And may your sleep be restful, your days be pain free, and your chickens be happy. ❤❤❤❤