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. ❤❤❤❤