24 May 2012

~ It is what it is ~ The Diagnoses of Lupus

For a very long time I have carried the mantra,
"This too shall pass"
in my brain.

With each day always bringing new symptoms,
{from Fibromyalgia, Chronic Fatigue, and Rheumatoid Arthritis} 
I would tell myself that this was only temporary.
These symptoms would hang around awhile,
force my body into a Flare,
and then slowly, slowly, they would make their exit.
A week, a month, or longer..I would wait.
For the day I knew I was feeling somewhat better.
And my mantra was right.
It did pass.
Although never symptom free, I could then
function at a pace of a somewhat normal life.

This has been my life now for the last 5 years.
The first 4 years, I was able to function at a good level.
To still care for the horses, muck stalls, yard-work,
do all the grocery shopping, errands.. 
everything that takes the energy our bodies give us
to complete our daily tasks.

But, last June, I had to face reality.
Mornings found me unable to get out of bed
when the alarm clock said it was time.
And the insomnia that has plagued my nights 
for so very long, 
just increased the fogginess during the day.
The days became filled with heat and humidity.
And that only added to the intensity
of my muscle, joint and nerve pain.

So I tucked myself in for the summer.
Staying in the comfort of air-conditioning,
giving my body the break it deserved.
Summer turned into Fall,
Fall into Winter.

I felt like I was sliding down the rabbit hole.
The muscle and nerve pain was worsening.
And the unrelenting fatigue became so overwhelming,
that most days just lifting my arms or walking
from bed to couch, took every bit of energy my body
had stored in it.
Through all this, I went on a research mission.
Reading up on every disease that manifests these symptoms.

Then one morning in February,
I had a bright red rash across my cheeks and nose.
In the shape of a butterfly.
And I knew.

A tell-tale sign of Lupus.
I made an appointment with my physician
and he scheduled the protocol testing for this 
adding in a few other tests to cover all the bases.
It took a good month for everything to come back.
It came of no surprise that indeed I do have Lupus.

Even though for the months I was reading and researching,
becoming filled with knowledge of this disease,
it still knocked the wind out of me.

It's one of those things where you have to keep 
reminding yourself that this is reality now.
Having Fibromyalgia, Chronic Fatigue, 
Rheumatoid  Arthritis, and then
throwing Lupus in the mix..
Ye, Gads.
I sound like a train wreck!

Last week I began a new medication for the Lupus.
Until my body adjusts to this new med, 
the side effects for the first 6 months are pretty intense.
It increases my fatigue. 
Which means right now I am pretty much in the negative
for being able to bank any energy!
It also make me incredibly sick.
Very, very sick.
For all the reading I have done on this
particular med, 6 months is standard until my
body finally adjusts to it and the benefits kick in.

But, that's OK.
I have the time.
Since January I have pretty much been home-bound.
So having to deal with nasty side effects is just 
something I will get through.
Hopefully, none of the "bad" side effects that
remove certain patients from this drug 
won't happen to me.
As I only have a couple of other choices
when it comes to medications.
And the side effects of those are greater 
than what I am dealing with.

So here I sit.
For time to fly.
A whole 6 months.
And hoping for a few changes 
that may give me back some quality of Life.
~ ~ ~
What would I do without this place?
This blog of mine that has led me to 
wonderful friendships and a sense of belonging.
This little neighborhood I visit each day,
to catch up with all of you!
I would be a very lonely girl 
without my lovely community filled with people
who so graciously open up their own lives to share.
My quiet little world gets a little louder,
and a little happier each day I come here to visit you!
And when you visit me?
It is chatter in my living room!

So for now, I am taking this one day at a time.
Practicing acceptance.
And living in my new mantra,
"It is what it is".

Thank you so much for reading.
Have a glorious day, each one of you!

Learn more about Lupus by visiting the
Lupus Foundation of America.


Farmhouse Style Living said...

Oh my sweet friend, this just makes my heart hurt for you. I wish that I had a magic wand to take away all the pain and let you enjoy your wonderful life. Know that you are loved and thought of every day. I hope that soon you can find the relief that you so deserve. I want to come there and take care of you now! If you EVER need ANYTHING, know that I will do my best to help you!

Lots of love, kisses and gentle hugs!

Joyce Ann said...

Oh Misha, I am so sorry to her this. Lupus is a very craft, cagey disease. I will continue to lift you up and hope this medicine does exactly what it is supposed to do and gives you back a better quality of life. Hang in there.

Flat Creek Farm said...

Oh Misha.. sending the biggest hugs ever. I pray your quality of life will only continue to improve now. Hubs and I each have cousins (quite a coinky-dink) who have had Lupus for several years. I am happy to report they both are doing well now. My cuz is in her 40's, and hub's cuz is nearing 60. Bless you, Girl!! I only have to deal w/ the chronic fatigue, and even that knocks the wind out of my sails more often than not. Much love from me and my donk girls ♥♥♥ please keep us posted!

Grandma Barb's This and That said...

I am sorry to hear of your diagnosis of Lupus. I hope the new medication can restore your health to the point of a normal life. Sending lots of prayers.

Laura said...

Oh Misha! I'm so sorry that life has thrown you yet another curve. I pray that your body can adjust so that these new meds will do their job. Hugs, hugs, hugs, and more hugs being sent your way!

Julie Harward said...

Hi Misha...I am sad to hear this about you. My daughter has Lupus too and it really kicks butt but she is doing so much better now. I hope you can get on top of it and enjoy life more. I have been catching up with your posts, the one with the cat's butt sticking out..cute! Hang in there, you are right, it is what it is..so is growing older! ;)

Amy said...

Ahh sweetie...this was just horrible to read...as if you didn´t already have enough on your plate from before...I know it is very cliché to say but I truly believe God doesn´t give you more then you can handle....he must obviously think you´re a very strong person since you´re getting more then a generous share of problems in your life...and being the strong person you are, I know you will get through this time also! I also believe attitude is everything...with this said, I´m sure you´re in for some rough times- you´ve been through rough times and perhaps there are more ahead ( I hope not) being positive will help you navigate those rough times sweetie- I truly believe this! It´s easy to sit across the ocean in my little house here in the woods in Norway and tell you to be strong when I have absolutely no idea what you are going through, i hope you don´t think I´m horrible for giving you advice about something I don´t know anything about..(what you´re going through) but in general I think it´s good advice...;-)
I´m sending you lots of big big hugs from Norway sweetie- all my fur babies send lots of kisses too...I´m sure your fur babies are a great comfort in this difficult time...

Maggie May said...

I am sorry for your diagnosis but glad you know what is wrong. I hope your medication works very soon. I do know a lot of people find relief from symptoms with serious dietary changes. xo

Marilyn said...

Taking care of yourself will be your number one priority for a while, won't it? Let any and all who offer their help do it as a gift of grace for you. Life isn't fair.♥♫

Karen said...

From what I understand, Lupus is a very cagey disease. Sending good thoughts your way, that the side effects will not last as long as they sometimes do (but not always!)... and you are able to regain a very good quality of life out there in the mountains. Atleast you have a diagnosis that was elusive till now and you can proceed with the knowledge you need to tackle this thing.

Sending love - Karen & critters...

Anke said...

Misha, I am so very sorry to hear this. I hope the medicine will start working for you soon and the side effects won't be so bad.

Denise at Autumn Sky said...

Oh Misha, I hate that people have to deal with diseases that can be so restricting in your life. Would it be possible to find someone to come live at your house to help out? I hope and pray the medication does its job. I am not so good about visiting blogs, but I am darn sure going to try to remember to visit you!!!


Bianca said...

Oh Sugar, my heart hurts for you.
Having Fibromyalgia, Chronic Fatigue and Arthritis mysels, I DO know were you come from.... I'm always wondering myself "what is the next thing I have to live with?"
Lupus is a horrible thing, my mom has it and it flares when your fatigued, so for you always???
Sweetie, I'm thinking of you and pray you soon feel better or rather soon adjust to your new meds.
Kiss and hugs,

sydney K said...

Oh Misha! I am so sorry. My mother has fibro and rheumatoid arthritis but to throw that much more in the mix I couldn't imagine. I hope you are feeling better and it's good to visit your blog again after my own hiatus

Donna said...

You are right it is what it is. At least now you know what you are dealing with and hopefully the meds will work quickly and help.
I will be praying for you! I will send a special request "above" to watch over you :)
Now snuggle up with your "babies" and know we all love you!
Big Hugs,

TexWisGirl said...

oh, honey. i won't even ask what more could there be... i don't want to invite any more pains or trouble. i do hope the meds will be more beneficial than harmful - and that time moves quickly!

Alisha @ Crafty Brooklyn Army Wife said...

We are so sorry and our thoughts and prayers are with you!! I can't imagine what you are going through right now.
Big Hugs and Kisses!!

Golden To Silver Val said...

I'm so sorry this was thrown into the "mix" but now at least you have a name for it....and with a name we can roll up our shirt sleeves and tackle it. Get to know it and use that knowledge to be as pain and symptom free as possible. I don't know a lot about it other than you're supposed to stay out of the sun. Do your research and "know your enemy".....you will do fine. Sending get well prayers up for you, Misha. Big big hugs and keep us posted on how you're doing. Much love. xo

Gaelyn said...

So sorry to hear about this latest diagnosis. You are one very strong womyn to deal with all of this. My prayers are with you for a swift 6 months and then feeling better.

Please do share this experience on your blog when able for others dealing with the same thing.

Big, and gentle, HUGS!

Jeni said...

Oh my! I'm so sorry - but at last you have answers and a plan, even if it is a slow ride back.

HUGS to you my friend.

Diane Cayton-Hakey said...

Oh no!

Well, I promise to never, ever complain again. Never. Let's all hope that this next 6 months flies faster than a jet at mach 10 speed.

Thinking of you today as I do so many days and wishing you nothing but goodness in your life, Misha. xox

Mitzi said...

It must be comforting to finally know for sure what you have. Stay positive and pray. I hope the months go by quickly for you and you soon feel a good change in your health.

Donna said...

I am so very sorry, my sweet friend. I hope and pray that the medicine will work some magic and give you relief. Please continue to keep your spirits up and surround yourself with love from your family, friends, and your four-legged companions.

RoeH said...

Well - I don't know what to say. I'm so sorry and I wish I could be there to cheer you up with an M&M party or take care of the horses or something. I want to do Something. I'll always be thinking of you and pushing good thoughts your way and wishes mixed with lots of hope that things look better for you soon. I'm just wihout words tonight. :(

Cheryl Ann said...

I've had SOMETHING for several months...fatigue, then my knee problems...I'm completely EXHAUSTED at the end of each day. I began drinking a nutritional shake instead of eating lunch and my energy level is coming back. I've heard about lupus. Bless you and do the best you can. With my knee, I decided, "I AM GOING TO GET THROUGH THIS." It sounds like you've done the same thing, too.

Lynne said...

How can it be . . . another mountain to climb . . . it is what it is . . . BUT, not fair . . .

Oh, I know, nothing is fair but girl, you have had much, much more your share . . .

I will walk the road with you in the six months and six years beyond, need be. . . I pray this new med gives you some semblance of easier comfort filled days.

***** Calling all bloggers, let's stay connected with Misha, drop in, send her cheer, give her our thoughts and do some good deeds too . . . she may not send out her usual blogs . . . let's not expect, instead just give . . .

Misha deserves us to be there for her . . . Let's BE THERE for her !

Betsy from Tennessee said...

Oh Misha, My heart hurts for you... I'm so sorry to hear about your latest problems. Bless Your Heart...

I do worry about you. Did your parents move down closer? You could use their help I'm sure. I know that hubby works away from home alot now ---so I do hope that you have lots of help around --with the animals.

God Bless You, my friend.
Hugs and Prayers,

Deb said...

Hello sweet friend. I have a feeling this medicine is going to work for you. You are right in taking it one day at a time. Don't think of it as 6 months down the road. That will drive you crazy. I know it was probably hard for you to write about it on the blog but it was probably good therapy. I agree with the comment above...God only gives you what you can handle. Take care and I'll talk to you soon.

Hartwood Roses said...

Sweet Misha. This probably explains why your most recent downturn stayed in the downward direction. It sucks that the meds that are supposed to make you better will actually make you worse in the short-term ... but your optimistic attitude shows that you are doing all YOU can to manage it. One day at a time, one foot in front of the other ... and all the other encouraging cliches that I can think of ... I'm sending you a hug. We think about you often up here.

Angella Lister said...

I am sorry to hear about this but am praying that the meds do their work without too difficult side effects. love to you.

Amish Stories said...

I'm very sorry about your diagnosis of lupus and i knew of someone that had it, and it just went away after a period of time so please hang in there and take your medicine. And try and enjoy your memorial day weekend as much as possible. Richard

Red Gate Farm said...

Misha I hope you are using this time to take it easy and get as much rest as possible for the best results while on your medication! I'm glad that your blogger buddies can be a bit of a link to the outside world!

Thoughts and prayers,

Jeanette said...

I'm sorry for your diagnosis Misha but at least now you have answers and can begin treatment. I hope that the medication does it's job quickly without too much difficulty for you! You are in my thought as usual! PS When you get on Pinterest look me up and become a follower and I will do the same!
Jeanette Gohl

Country Dreaming said...

What can I say that hasn't been said already?
We are here waiting with you.
Blessings and prayers are being sent your way.
Take care and keep us posted.

Love ya!


Rhonda McKennon said...

I am sorry to learn of your diagnois. I too have all of your diseases I was diagnosed 7 yrs ago, I take Plaquenil and am trying to get on the new drug Benlysta. Be sure to get a good doctor. and Rest Rest Rest.

Thistle Cove Farm said...

Oh Misha, I am so sorry to hear your news; I wish it were otherwise. To have so many auto-immune diseases is devastating; heck, it's terrible to have only one! Misha, you and J are in my prayers and on the prayer list.

I love my dogs said...

So sorry to hear this, Misha. Keep telling us about this. Some reading here may have the disease or have loved ones with lupus or MS or other autoimmune diseases and it really helps to know that we are not in this alone. It helps to let it all hang out sometime. We will understand and pray for you. Also, we have to know what your furry babies are doing. Love when you tell about your pets.

Oz Girl said...

Awwww, Mish!!!! So not fair, with everything you already have on your plate. I am so sorry..... sending oodles of hugs from me and all the critters here. I'm wishing these next 6 months will fly by for you and bring you better days soon. I'll be thinking about you and praying for you every.single.day. Hang in there my friend! :-)

Kayla @ TheEclecticElement said...

Have you considered the possibility of Chronic Lyme Disease? I've been diagnosed with exactly the same things you have and have had similar symptoms and ups and downs until I found out it was Chronic Lyme Disease that was the culprit.

They don't call it the great imposter for nothing >.<

The unfortunate thing is Lyme, Lupus, CFS, Arthritis; they're all essentially the same, but are treated as separate entities. Even though I haven't been diagnosed with Lupus (I was almost early on), I understand what you're going through.

Regardless of what you've been diagnosed with or how you're being treated, I really hope that you find peace and health soon!