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.

Symptoms of Sarcoidosis 

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

The jokes on me!

OK, Now I have had a big ole slap in the face of the reality that "I can't do anything".....well I guess I should say "I can't do everything"!!!!! My wonderful UPS man brought me my new cookware this afternoon and I couldn't wait to fire them up!



Wellllllllll............FIRE THEM UP I DID!!!! I burnt the crap out of one of the pans!! LOL!!!!!!!! FYI, Waterless cooking is not the route to take for sweet potatoes. Remember that!! The book says to put cool water in the pot and bring it to a boil to loosen the burnt food off of the pan and then let the pan cool and clean as usual. (so I guess other people burn food in these too?)
It didn't say how long to boil the water. I have boiled the pot almost dry twice, about an hour and I still have burnt particles in it!!!!!!! At least Danny understood. I guess there is a learning curve that comes with this cookware. I wasn't supposed to know how to cook waterless until I had the right cookware, right?????


I had my follow-up appointment with my pulmonologist today about my sarcoidosis and I got a great report. I had to have pulmonary function tests and they were much better than in July!! Woowooooo!!!!! He did start me on a systemic treatment for the rash in my scalp. Remember that's how we found out that I had sarcoidosis in the first place? This area has been there for over a year now and hasn't gotten any better and actually has worsened in the past few days. The treatment is the same drug that is used to treat Malaria!!! Please pray for me that I can tolerate it. I am so sensitive to so many medications. He expects it to take as much as 6 months to really see an improvement in the rash.


We had at least a half inch of ice this morning so school was closed today. I did not want to go to the Dr by myself.....not that I was afraid of him, I just wanted to have a fun day of eating out and shopping!!!..........so I called Morgan and she was more than happy to agree to go with me!! She was so happy until her belly was full and then for some reason her feet started hurting?? I wouldn't tell her but mine were too. We did a lot of shopping, well looking at stuff and had a lot of fun. It was a GOOD DAY!!!!!!! Thank you Morgan!! We'll do it again sometime!!

Update!! December 10, 2009 @ 5:34 AM ~ The said pan is now free from debris and shines like a crystal. I had nightmares about this pan last night. I let it soak overnight with Cameo cleaner, a cleaner for stainless steel. I was afraid to even look at the pan this morning but when I did I was really pleased!! Why I have had to soak my other pots or pans for a lot longer than that to remove burnt food from them. Just kidding!! I usually don't burn my food! Or it's burned so badly that the pot has to be thrown away, such as Danny's popcorn pot!!!!!

I just recieved the dreaded results.....

.......and it's not good. I have Sarcoidosis in my lungs. I go next week for a CT scan of my chest for a better look at how extensive the involement. Robin works very closely, in ICU, with a great pulmonologist and is going to talk to him about my case. I will have to go see him soon. I went to the eye Dr yesterday and had a very thorough exam and my eyes are not involved. Thank You Lord!! I also get a new pair of the coolest glasses coming next week...afterall something good has to come from all of this, right??? I already wear glasses and was long overdue for an upgrade!!

Here's my new deck that my wonderful husband built me last week. The pictures don't do it justice!!

I plan on getting a lot of use out of this!!!

And here is a pic of the new paint job on the garage. Remember it was blue...yuck. I still have a little trimwork to do but we did most of it last week. Also some window work to be done. Thanks to Leslie!!! She was such a good help. She just shimmied right on up in that loader bucket like it was nothing for 3 days of painting. I was in it for 2 days and I am scared of heights!!! While we were up there we spotted a big black snake crossing the road but our big ole protective man took care of us. I was still scared though even being up so far off the ground!!

I just love this picture of my harvest!!

Life on the farm is very busy these days. Milking 2 goats or should I say 1 1/2 goats. Violet has been very sick with an overload of parasites. I know you are thinking that I should not have goats if I can't do any better with them than this, but we had wormed her the way we were taught and it wasn't enough and they had an opportunistic time right after the birth of the baby. She ended up at the vets office 3 days after the birth. She went off feed and is barely on her way back now. I am so afraid that she will dry up on me but I am really working with her. I only get about a cup each milking from her but almost a half gallon from Saphira each milking. With Saphira we wormed her as soon as she kidded so we could nip it in the bud with her and the parasites and it seems to be working well. I can start to keep her milk tomorrow!!!! Boy do I have plans for it too!!!!

This is a day that the Lord has made.......

Introducing Sunny Morning Farm's Durango's Tango!! Check out those spots, looks just like his Pappy Durango! We really wanted spots and boy did he deliver. This is not a good picture of his long legs and looooooong ears and a beautiful perfect roman nose but my camera was acting up. Robin has some of him up and about that I'll post asap. Only one. Boy did Violet fool us on this one, only one.....

I am not really sure how she is going to be as a mother. She doesn't appear to know what to do with him yet. We went ahead and milked her out and saved the colostrum to try him on the bottle in a couple hours if he doesn't seem to be nursing. He wants to and knows how but she doesn't want him to. Her teat was slimy when I milked her out though so I think he has been sucking a bit.
Robin, Morgan and I ventured into Amish Country today and had a ball!! We have a very small Amish community about an hour from us that I have heard of but thought it was much further down the road. We shopped at 2 stores in the community. Made out with the mother lode too!!!! I bought 26 dozen can lids. What was I thinking?? 26 dozen?? That's a lot of work! But they were sooooo cheap. I also found a great stainless steel milk pail for $26, it sells for $43 plus tax and shipping from the supply catalog. I now have milk on it's way!!!!!!! OMG!!! That makes me happy!!

Morgan about did the pee pee dance when we saw this sign! I plan to take her to Lancaster Pa. We went about 11 years ago and it was by far our best vacation ever. I just love all the farms and their way of life.
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As I said this is a day......... I had a Dr's appt this morning and left with some disturbing news. About 6 months ago I had a small place, well a couple small areas, come up in my scalp that wouldn't go away. Mentioned it to my family Dr and she sent me to a dermatologist. Was treated for a couple weeks for psoriosis, didn't get any better so she biopsied it a couple weeks ago. She was as shocked as I was by the diagnosis of "Sarcoidosis". Of course being nurses both Robin and I know what it means but were speachless and drew blanks about what this would mean for me. I knew it would effect the lungs and involved nodules but that's about it. I also knew it was autoimmune and it may answer the 8 year question of what has been going on with my joints. They could not figure out what was wrong with me after checking for everything.

I now have to go for bloodwork, a chest Xray, an eye exam and a visit with my family Dr which will probably mean back to my Rheumatologist.

I couldn't wait to get home today and research this disease. I feel better after learning a little more about it. I am however worried about the chest Xray. I have been very short of breath for quite a while now but I was chalking it up to not exactly being in shape ;-) I will go for those test tomorrow if I am not birthing babies!!