CYNDI 06/23/2012

Hello everyone it's been awhile since I have written on my Blog.  Little have change and in my situation a little is a lot better.  The rash and lesions have cease, using alternative medicine has help.  I am still getting the violent coughing at night and in the morning.  I started to notice that during the day when I am active I don't cough as much.

I have to go back to the doctor to see if the scarring has stop spreading.  I must say I am doing well, my health is stable.  I want to thank everyone that has prayed for me asking God to hold me within his grace.  If it wasn't for you guys letting me vent and giving amazing information, I wouldn't know what I would have done.  My hair is growing back I have the shave side covered up, my skin is clearing up and my sprits are picking up.  I like to give a special thank you to my Sistars & Bros who have reached out to me through emails and messages via facebook.  My light is still shining bright.  I have a new GROUP on facebook call "OFF MY CHEST "VENTING" please sign up leave a post so i'll know you checked in and click like for me.

BREATHE WELL

JUNE 4, 2012

I know i haven't been on here in a while, I am doing ok.  I would like to thank each and everyone of you that have supported me through this disease. Although my left lung is scarred it hasn't gone up any percentage it's still at 51% thank God.  I will post again next week after I have seen the doctor then i will do a video blog.

Breathe Well

CYNDI 5/7/2012

I know I said I was writing anymore but hey, this is what makes me feel good.  So check out my video blog:

This is to those I forgot to mention Ameila, Virgina and Toogud thank you guys for your support and to Loving and Caring you guys are the BEST...

As always BREATHE WELL

CYNDI 5/3/2012

Last night I was feeling depress, down in the dumps again complaining WHY ME.  I spoke to some ladies in a group called Loving and/or Caring For Someone With Sarcoidosis. They gave me their horrors of sarcoid and I must say what I am going through is just the tipping of the iceberg.  I am afraid, some had sarcoid in the liver, brain, eye and other bodily organs. I wished i would have talked to them before I took this drastic measure.  I felt some type away last night and this what happened:

You can see the sarcoid on my scalp if you look closely, my scalp is suppose to look light, but it is dark because of this disease.  I was going to shave it all off but my husband stopped me.  I need my family to help me through this, they don't know my pain.  If only they would call and say hey auntie how are you.  Don't get me wrong 1 or  2 has talk to me BUT I have a lot of nieces, you wouldn't believe it .  Anywho, i'll be okay, my sarcoid sisters/brothers are now giving me support.  

As always BREATHE WELL.

CYNDI 4/29/2012

Hi everyone it's me again same oh same oh, just want to tell you guys about my new symptom UGH it's my face.  This disease has really taken a toll on me, it made me darker, I look sick and I hate looking at myself in the mirror. I've gain weight which I think is from the medicine and even my lips are darker UGH take a look at my video blog: 

BREATH WELL

CYNDI 4/27/2012

Well this is going to be my last one blog of month, was in the hospital for two days.  Still trying to find away for me to tolerate this disease. I am thankful for the individuals who left comments and prayers, if you know of any other person who is suffering with this disease have them contact me so we can exchange ideas or help one another, my email is sexytigerpaw@gmail.com.  No new symptoms and I thank God for that.  Only way I can get help with this disease if you pass it on have your friends and family read my blog, you never can tell they may know a thing or two about it.  As always BREATHE WELL.

CYNDI 4/24/2012

I dance to the rhythm of the cyclone spinning in my lungs.  Clean air feeds my soul like fire burning of a thousand suns for finally I can breathe wondrous air.  For years sarcoid smeared my lungs. Every hour on the hour my lungs gasp for air, needing air to pump into my blood stream that would set my skin ablaze. My need to breathe would break down like I've gotten a flat tire.  My soul cries out to breathe again.  I cry someone help me! How can I get air pumped into my lungs? How can I get this disease out of my lungs is there no cure? My soul cries out I want the BREATHE AGAIN.

Please continue to talk to your friends and family about this disease maybe someone has information they would like to share. THANK YOU AND BREATHE WELL.

CYNDI 4/20/2012

I have nothing good to report everything is still the same, getting prepared to go on oxygen at night or whenever I need it, plus I have a sleep study next week. Still waiting for the doctor to come up with alternative medicine for me.  It was nice the Tisha Campbell read my post, I ask her if she would be an advocate for Sarcoidosis maybe it will move a little faster if she bring this disease out and maybe her friends will help.  Still waiting for an answer.  Thanks to those who left me a comment.  Not that many people would give up a lung for someone they love, that is just so sad.  Well keep me and anyone else who is suffering in your prayers.  God bless you and BREATHE WELL.

CYNDI 4/16/2012

QUESTION:  If you could save a person life by giving a piece of your lung would you?

Leave a comment below if you wouldn't or hit LIKE on facebook if you would..

Thanks again for your support and BREATHE WELL.


CYNDI 4/11/2012

Didn't sleep to good last night woke up heart racing, couldn't breathe it was as if someone had there hand over my mouth and nose. Went downstairs to get a glass of water to overcome that feeling. I lay back down and started thinking how my doctor visit is going to turn out, and slowly dosed off. Awaken around 7am with the usual routine once I got that out of my system showered and off to the hair salon to relax myself. Went to doctor and took a CT scan and the results not good, first I am being referred for sleep study, he told me what I go through at night can also stem from sarcoidosis, second I was told my left lung is scaring which is bad and he would have to go to alternative medicine since the prednisone is  not working. Heaven help me. I need prayers sent up for me. I am going to sit and take all this in. I'll write again soon,

 

CYNDI: CYNDI 4/8/2012

CYNDI: CYNDI 4/8/2012: Today is Easter Sunday and everyone is waking up with smiles on their face, God in their heart and off to church they go.  Not me, today it...

CYNDI 4/8/2012

Today is Easter Sunday and everyone is waking up with smiles on their face, God in their heart and off to church they go.  Not me, today it's like any other day, coughing, puking complaining "whoa is me". Stayed in the bed until 1pm., then forced out by my husband we have plans to go visit his brother for dinner, "ugh" how difficult this is going to be.  I hate getting tired it's like swimming and coming up for air. Finally got dress around 3pm and off we go. Got there and oh no stairs lots of them like climbing a mountain.  I sit there and watch everyone laughing and talking, I jump in once in awhile, just thinking how is everyone health here are they experiencing remotely what I am going through. I often sit and wonder why was I chosen to go through so many trials and tribulations, there has to be a reason. People say stay strong everything is going to be alright, keep God in your life.  I have gone through a brain aneurysm, bipolar, depress, anemia, kidney problems, migranes and now sarcoidosis HOW MUCH CAN ONE TAKE.  I just can't kick this sarcoid NO CURE. I have to stop now I'm crying and venting and all it's making me do is cough.  Here is another ugly ailment SARCODOSIS causes. While you looking at this image send your friends the link to change.org help me find a cure.  Goodnight and BREATHE WELL.

CYNDI 4/6/2012

Here I am again, not a good day and had a bad night.  Woke up with so much coughing it made me regurgitate.  When coughing I can't breathe and it takes my strength from me "exhausted".  Today I feel so weak and my eyes feel like glass.  Can't really write to much today because I am feeling totally drain.  I did say that I would give you images of how sarcoidosis affects the body and I've giving you the physical "outer body" of the disease.  This is image of how the sarcoid takes over the body:  NOW this is not me but an image of what sarcoid can do or what to be expected.  I am having problems with my eyes and praying that this does not happen to me. I have a rash on the eyelids and using ointment to take care of it before it spreads.  You know how much we women love our hair, I have it in my hair like a cradle cap, but thank God with the ointment it is going away but leaving me a little bald in the front. UGH!!!!!!!!!!  At the end of my writing I will reveal how I look and how sarcoid have change my life.  I am hoping that someone, somewhere find a cure for this. It's like I am being punished. I ask myself what did I do to deserve this.  I am going to write once a week because some days it's just to hard for me to get out of bed...have a good day and holiday and don't forget to BREATHE WELL.

SARCOID 4/4/2012

Last night was good I got to sleep the whole night without episodes.  Writing here and letting everyone know that I have sarcoidosis was a lift off my chest "no pun intended", I can let everyone know just how serious this disease is and how it recks havoc within and out of your body.  I awaken checked my body to see if anymore lesions or bumps, did notice a rash on my chin but hey you get those to. I called the doctor  and was told to take fish oil to keep my skin from rash.  I have gone to the dermatologist to get cortisone shots for the bumps, can you imagine shots in every bump and this is just the hand.

I mentioned earlier in my introduction about myself that with this disease there are several affects from the sarcoidosis and bumps are one.  As I tell my story, I will give you a image of each one.  With these bumps they start off with an itch and it becomes red with the outcome of what you see below.  So come back and I will reveal what other skin ailment sarcoidosis causes.

Goodnight and BREATHE WELL

SARCOID 4/3/2012

This morning I awaken to servere coughing and nose bleed.  I'm still trying to be strong with this disease.  I have a new ailment, small bubble in my mouth, when I squeeze it slime comes out. Have to let my doctor kow about this. i this another symptom that is associated with sarcoid.  I went out today to Walmart nice walk within the store had to stop a couple of times out of breath.  My granddaughter said I was walking like and old person, I had to laugh.  I also notice that when I eat it always starts off with the hiccups ...hmmm wonder whats that about, can't wait until tonight when my body is still and no movement that seens to calm things down.

To my readers have a wonderful day/night BREATHE WELL

CYNDI: SARCOIDOSIS

CYNDI: SARCOIDOSIS: I was diagnose with sarcoidosis January 2009. My symptons were loss of weight, I was 180lbs, and went down to 135lbs.  I had shortness o...

SARCOIDOSIS

I was diagnose with sarcoidosis January 2009. My symptons were loss of weight, I was 180lbs, and went down to 135lbs.  I had shortness of breath, excessive coughing and fatigue.  I went to my primary physician who suggest that I see a lung specialist. He  examined me and sent me for xrays which showed that I had lymph nodes in my lungs.  He referred me to get a biopys and it showed that I have sarcodosis.  My sarcoidosis is so bad that I had to be put on steroids.  I go every three months for chekups and breathing test, which showed that the sarcoidosis spread to both lungs. Having  this disease is horrible. I wake up with coughing spells, I cough up heavy mucus that leaves me ehausted and with chest pains.  I get fatigue doing daily activities other effects of this disease is, I get skin legions and rashes, joint and muscle pain, blurred vision and I never know when this disease with attack my other organs. I am told that there is no cure for Sarcoidosis and not much you can do for it. it's now 2012 and I am still suffering with Sarcoidosis.  I want to petition that they make this disease a priority.  Please go to Change.org and sign the petition to the CDC to make this disease a FACTOR.  I and no one else should have to suffer with this disease.

Sarcoidosis (from sarc meaning flesh, -oid, like, and -osis, diseased or abnormal condition), also called sarcoid, Besnier-Boeck disease or Besnier-Boeck-Schaumann disease, is a disease in which abnormal collections of chronic inflammatory cells (granulomas) form as nodules in multiple organs.^[1] The cause of sarcoidosis is unknown. Granulomas (of the non-caseating type) most often appear in the lungs or the lymph nodes, but virtually any organ can be affected. Normally the onset is gradual. Sarcoidosis may be asymptomatic or chronic. It commonly improves or clears up spontaneously. More than 2/3 of people with lung sarcoidosis have no symptoms after 9 years. About 50% have relapses. About 10% develop serious disability. Lung scarring or infection may lead to respiratory failure and death.^[1] Chronic patients may deal with waxing and waning symptoms over many years.^[2]