Thursday, February 12, 2015

A Day In My Life......

As many of you know I was diagnosed with Sarcoidosis in 2009. Sarcoidosis. I hate that word. As a nurse it was always so foreign to me. Only briefly mentioned in my VERY thorough nursing class. I had patients with it over the years but we weren't directly caring for that disease. These patients were forever showing up late for their appointments with the surgeon and stating "My Sarc - yes, a 4 letter word that I sorta pegged them with as being crazy and too lazy to say the whole word - My Sarc was acting up". Acting up? How does Sarc act?? Um hummm, whatever!
Or we also had the drug seekers - ends up being me stereotyping those patients - "I know you gave me Lortab #20 two weeks ago for uncomplicated laproscopic cholecystectomy (gall bladder), Dr Mac, but my Sarc was acting up so bad and I had to take them all up sooner. Now my incision hurts and I need more."
Get a life!!!
Then my years as an ER Nurse...oh my...how many times did I hear "My Sarc is acting up."

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2001
I started experiencing flu like symptons, joint pain, occasional fatigue - which went along with those flu like symptoms, some days worse than others. Some flare-ups worse than others in days of suffering - ranging from 3-4 hours to 4-5 days. Yep, I had the flu more than ANY of you guys!!!!
I blamed it on anything, worked too hard around our house - in the garden way too long - too many 12 hour + shifts in ICU - then I decided that it was all in my head. In 2004 the pain became so severe that my Dr said OK lets check some things out......lab after lab after lab = I DON'T have a clue why you are so inflamed, (sed rate thru the roof, joints hot to the touch) must be rheumatoid arthritis.
Off to a wonderful Rheumatologist who did every test known to man and finally decided that I had one of the "over 100 different types of RA that are Rheumatoid Factor Negative" 
OK Then! A diagnosis. I could treat my pain with Aleve and a hot tub and carry on.....until the "flu" would hit me out of no where...BAM...get me a bed, I'm going to die.....feverish, but hey NO fever....well I am always sub-low.....of course I am running a fever, where else would these chills come from. 

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Then that immune system of mine - drive by my house or the building I worked in with a virus of any type and by crackies you can bet I had it, soon, and 10 times worse than you had it! LOL
I gave up my great 3-12 hour weekend night shifts in ER because I blamed everything on night shift.
Then this eruption of a small area in my scalp started. Inflamed. itchy area that would dry up but never go away and only flare up again for 8 months. Was at my family Dr for my 3rd virus in 4 months and showed it to her. She made a horrible face and said that must be checked. A dermatology appointment in 2 weeks? OH NO I AM DYING!!!! Those are 6-8 months down the road!
She treated me for a couple weeks with topical steroids and it was no better so she wanted to do a punch biopsy. She led me to totally believe it was psoriasis. The next week my RN daughter was in from Ga and went with me to get my results and we were going on that day for a day of play.
The Dr said "You have Sarcoidosis!" 
I was totally in a daze. Shocked out of my socks!
I asked well does that have anything to do with all my joint pain I have had for 8 years? I don't know, probably, here's a few print offs on Sarc.

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We leave the office, get in hallway and I look at Robin and said "I only thought Sarc affected your lungs and black women?" She said "That's all I know about it, too."
Two fairly good nurses were clueless about it.
They started running tests and found out my lungs were full of little nodules but my breathing was still barely compromised. Short of breath on exertion but I had labeled that as FAS - yes that's what I heard a lot of patients being diagnosed with over the years "Fat A** Syndrome!! Of course that's why I was short of breath all the time! LOL
Fast forward 5 years and I have remained EXACTLY the same as I was when diagnosed! Praise God!
The lesion in my scalp is still there just exactly as it was, only it has ate a hole in my scalp thru the cartilage/meat/muscle and into the bone of my head, .......I will explain this further down below.....my breathing is exactly as it was, joint pain maybe a tiny bit better. Flu like symptoms very very very often now!

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HOWEVER, around January 2014, maybe a little before, I started to experience incredible fatigue and new onset of muscle pain that was so severe that I could hardly tolerate it. I worked 3 - 8 hours shifts a week as a home health/ private duty nurse that was very laid back and yet it took everything out of me. This too shall pass, I kept telling myself.
Had a couple Drs visits and nothing really pinpointed that could be the culprit. 
I have spent the entire year +, at least 13 months, with this fatigue and muscle pain that can't be explained. 
I am a very busy person and fight thru the pain and fatigue most days but I've been miserable. I whine until I can't stand to hear it any more, myself. I am so sure that my family is totally sick of it, too.
Nothing helps, only briefly, I mean as in 12 hour Aleve may give me 1-2 hours of pain free relief but still no energy. Let it be known I have never been prescribed anything for pain, OTC so far in this journey. So what the heck is wrong with me?
No it's not Cancer (not that i know of) and for that I am grateful and yet I am so ashamed of the whining. I have a daughter who fought a long hard battle with breast cancer and never muttered a complaint. She is fine right now!!! PRAISE GOD, AGAIN!!! 
I have had two friends that just passed away from cancer and they were so gracious and never complained. Why do I complain so much? 
I guess I am just a big baby!
Actually, I whine, not really complain....I know, same difference...sorry!
I whine because this illness is a nuisance. A thorn in my side.
A disease that Dr's know little about.....bingo.... could that be why us nurses knew so little about it???? I think so!
A disease that doesn't ordinarily end your life, not that I want that to happen, but maybe why so few Dr's actually know a lot about it. Don't get me wrong I have the BEST family Dr there has ever been!! She admits that she doesn't know a lot about "Sarc" (I have just now started abbreviating it myself) and she has left it up to me to find a specialist at any of the local universities ie. UVA or Duke. Well I tried that a couple years ago and all the Dr's listed as sarc Drs had either retired, left the area, went into research, or really don't "MESS" with sarc! Yes, office personnel said that exact word to me. (She didn't want to hear about my "Sarc acting up, either!)  I gave up because at the time I was floating right along with no changes. 
Yes, I had a chest Xray last fall and it is exactly the same as it was in 2009!!! Whoop whoop!!!!
PRAISE THE LORD!!!!

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So why do I feel so bad every day of my life?
I often get online and research Sarcoidosis and there really isnt a lot about the disease on there. Lot's of forums and frankly after reading a few of their stories I decide that I am tough as nails and am fighting my way thru this crazy disease on my own. If I continue to work hard, in my 4-5-6-7 jobs that I think I need, because I WANT, and continue all my fairly strenuous hobbies that I am obviously doing the right thing and keeping myself from breaking down and having to go on steroids or chemo drugs and I don't want to do that due to all the complications associated with those drugs. 
I was placed on Planquinel in 2009, still on same dosage, which is max dosage. Is it what has kept me the same as far as my lungs and skin lesions? I dunno! My Dr doesn't know? Has it been my activity level? I dunno. I would say it has definitely helped. I am not a lazy person and it has ripped my spirit this past year feeling so fatigued and sore from head to toe. Down right pisses me off!! I do not do well with my wings clipped!! Here I go again, whine, whine, whine.
I really believe the whining comes from the unknown....what is wrong with me???

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So last night after dinner where Danny and I discussed my situation, yet again. (I know he gets tired of me discussing how I had a spurt of energy and painted a room, planted the entire garden, scrubbed the vinyl siding with a toothbrush after doing the entire months laundry and baked three cakes one day....then the next day....I sat on couch all day and couldn't move until 5 pm and then I have written 2 chapters in my book and scrubbed two bathrooms and made a gourmet dinner in two hours flat!)
I got online and stumbled upon the greatest article ever about Sarcoidosis. 
They wrote this article about me.

WOW! That was an eye opener!
I didn't cry this much when I was first diagnosed and my family Dr and I got into a very heated emotional discussion over the phone and she basically told me she didn't give a rats rear what I had been diagnosed with that she knew nothing about sarcoidosis and would not be treating me.....and then she asked "Geeshhh, are your crying? Are you kidding me? What is there to be crying about? What a baby!"
True story!!
Needless to say I have a new Dr!!
There I was with a new freaking diagnosis and my lungs full of sarc nodules and only a dermatology NP to treat me.....so float your own boat Becky!

I get online and most the literature was what is sarc, how it affects you....it won't kill you....(should say it will only make you wish you were dead, but it didn't) .....then some of those "crazy people" who don't have a very high pain tolerance on the forums. Ha thay don't have the same sarc as i do!

Until January 2014 I have dealt.....I still deal....My head has a hole in it that is very well hid by my hair that I am fortunate to still have, do not want Methotrexate mainly because of my hair falling out in that area and you guys seeing what I am talking about. Won't be pretty!
The mornings where I wake up and wonder the first thing 'how am I going to feel today?"
I have thought that there must be something else wrong with me besides sarc. Surely it didn't treat you like that, I mean in my 13 years with it (well 12 years before the harsh symptoms appeared)
it was mostly tolerable.
Then there it was in BLACK and WHITE!
Becky has THIS!!!
Pay attention to the part about the muscle pain and fatigue and the skin lesions eating thru to the bone.
This is what the rest of your life will look like, you are not crazy!
Oh well maybe I am crazy...a crazy S-A-R-C patient!

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Why did I feel the need to share this?
You guys know I am an open book.
I needed this blog post for my reference as a timeline marker and I want to explain why I whine about being tired, sore, etc etc yet tell about the things I do on a continuous basis...ie. painting, gardening, all my jobs and hobbies....yet complain about my woes.....it's not me it's my disease!!
Apparently I am just playing out the characters in the classic textbook Pulmonary Sarcoidosis 101!
Now I know what is probably going on....yes, that does make it more tolerable, I think??
Now you know, too!
Time to go on that hunt for a SARC Dr. Please let me know who you go to. I know there are a few of you sarc patients out there! A few on my Facebook friends list. 

Prayers are as always very welcomed!!
God Bless you all and thank you for taking up your precious time to read this!!

Becky


3 comments:

Leslie Shelor said...

Wow, Becky. There just aren't any words.

Red Chair Moments said...

Robin shared this with me last week. You are covered in prayer! Even through the pain, God can use this to be a giant megaphone for His grace and glory as others what Him in and through your life. Love, April

Lilac Cottage Homestead said...

I will be praying for you!! God Bless

Kelly