"BACK IN DA DAY"

Let's start from, THE BEGINNING!!!!

I want to take you back to where this Disease first started "showing it's agly head".

It was the Summer of 91', I had been under a whole lot of stress at the time (My Father died 2 yrs. prior, My Preemie son had Health issues of his own, & I was having relationship issues) and along with the stress came a bunch of FEELINGS...Healthwise....that I was not familiar with.

I was experiencing Mood Changes (thought it was due to the "depression"), Night Sweats, Low Grade Fevers, Funny stuff going on inside of My mouth (the feeling of cob webs....yeah, I know....sounds strange right), Dizziness, Lightheadedness, Funny things happened with My eyes (I could not see straight)....My eyes felt as if they were twitching back & forth, which in turn would distort my vision.....and a slew of other symptoms.
I went from one doctor to another.....and they all would send me home with the same "confusion" that I came into their office with.....and sometimes, even worse.
I was soo tired of being told that "it is just allergies", Or "you just need to rest".....LOOK, I KNOW MY BODY...AND IT IS GOING THROUGH SOME STUFF THAT IS NOT NORMAL....this is what I wanted to shout from the rooftops....I was soooo upset & confused......I HONESTLY THOUGHT I WAS DYING!!!

What had I done to deserve this.....Was I that much of a "bad person" to end up with such ill health....Who will hear me out & understand what I am going through....
These are the things that would rush through My mind on a Daily Basis.
I didn't know.....the doctors didn't know.....THEN WHO KNEW!!!

Finally, My symptoms were starting to fade off some.....and I went into the doctors one last time (by then I was feeling alot better), but this time is wasn't for a "sick visit", sorta.....this time I went in because I wanted the doctor to check my breathing out.
I didn't have a cold, but if you stood close enough to me...you could hear me "inhaling & exhaling" as if I was congested.....but there was no congestion in my chest......go figure!!!
The doctor sent me to have a Chest X-Ray and a week later, I was called into the office because of something they saw on the X-Ray.It was a Black Mass......(shockkkkk).
Now the first thing that came to My mind was, "My father just died a couple of yrs. previous to Lung Cancer".....and I didn't smoke, so why is there a Black Mass!!??

I called up my mother crying and told her that she had to go with me to the doctors office so they can tell me what this Black Mass was.....I WAS SCARED STIFF!!!
When we go to the office, btw....time seemed to have gone soo far back in My Life....and soo fast ahead of My Life during the drive to the Doctors & back......We met with a Female doctor and she told Us....AGAIN, that there was a Black Mass on my Lungs, and it could either be Lung Cancer Or a Lung Disease called Sarcoidosis.
Neither One sounded Good to Me.My head was spinning even faster than before.
I couldn't even talk.....My mother did most of the talking.
One question was, how soon can we find out....and the doctor said, as soon as I have the Biopsy of My Lungs...we will know where we stand.
Sigghhh......Heart rate Up.....Panic.....!!!
BIOPSY.....what the heck man!!!Okay.....keep your cool naimah, you need to think some things through....Whew.

Jump to the Biopsy.....which was NOT a Fun Thing, AT ALL....and My sister warned me about it too, but I had NO CLUE it was going to be like THAT.
Anyway, I got through the Biopsy....now it was time for the results.

Oops, I jumped up ahead too far, lolol...I forgot to mention that she (the doctor) referred me to a Pulmonologist in the area.....he was a nice man, and showed he cared about my "discomfort".
Now, My mother & I went back to him for the results....btw, it was the longest week I had ever gone through.....He told Us that it was in fact the Lung Disease Sarcoidosis.
I have never heard about this Disease before....but while waiting for the results day to reach, My mother was speaking to her sister and she mentioned that My aunt (my Moms brothers wife) had the same Disease.....so I had a few ph. conversations with her about it and she reassured me that it wasn't as bad as I was making it out to be and that you can live with it, but depending on the severity of the Disease....you may need to be on Meds. for the rest of your life.
Well as long as I was going to be ALIVE, I was good with that....lol.
He told Me that it was NOT Life Threatening....and that I could NOT die from it........Well what the heck did he know, low & behold....you CAN die from it, actually....I guess you die from Complications due to it....but still, YOU CAN DIE!!!But back then, I guess he didn't have the information that is out today.
Today, you can Google Sarcoidosis....and it will bring you to several people WHO HAVE died from it, Or died as a direct result of it.
So don't tell me you can't die from Sarky......

When I got home, I called My aunt and told her....she sent me some Literature to read and boy was it helpful (I didn't have a computer back then....so I wasn't 'privy' to the amount of info. that I am today)...and btw, My "New" doctor DIDN'T have ANYTHING for me to read about this Disease....it was soo Rare that not much was written about it.....NICE!!!

Anyway, he put me on a bunch of Steroids....in pill form (Prednisone) and through Pumps & Inhalers.
Oh....did I mention.....THERE IS NO CURE FOR THIS DISEASE!!!!....and the only Medicine that Helps....are the Steroids (Prednisone).
I blew up soooooo big in such a short amount of time....I could not believe that these meds. could do such a thing.
I must say, the meds. DID work....I was back to My old self in no time.
He only had me on the meds. for two weeks, and I was glad about that.

After that, I had a few "Flare-Ups" every now & again.....Nothing serious.

Each time I would have one (flare ups) he would put me back on the Steroids for two weeks and again, I was back to normal.
And it went on like that for a few yrs.....with HUGE GAPS in between, I would be WELL for soooo long....that I thought maybe the Disease had "left the body" for good.
But it would ALWAYS show up, just to let me know...."Yup, Yup...Still Here", lolol.

Okay, that was several yrs. ago......NOW JUMP TO ABOUT 4 YRS. AGO.
THAT is when the Horror began.....AGAIN.
Only THIS TIME....it was staying around for a while, like FOR-EV-ER!!!!



To be continued.........

From the Begining

Let's start from the Beginning.....

I want to take you back to where this Disease first started "showing it's ugly head".

It was the Summer of 91', I had been under a whole lot of stress at the time (My Father died 2 yrs. prior, My Preemie son had Health issues of his own, & I was having relationship issues) and along with the stress came a bunch of FEELINGS...Health wise....that I was not familiar with.
I was experiencing Mood Changes (thought it was due to the "depression"), Night Sweats, Low Grade Fevers, Funny stuff going on inside of My mouth (the feeling of cob webs....yeah, I know....sounds strange right), Dizziness, Lightheadedness, Funny things happened with My eyes (I could not see straight)....My eyes felt as if they were twitching back & forth, which in turn would distort my vision.....and a slew of other symptoms.
I went from one doctor to another.....and they all would send me home with the same "confusion" that I came into their office with.....and sometimes, even worse.
I was soo tired of being told that "it is just allergies", Or "you just need to rest".....LOOK, I KNOW MY BODY...AND IT IS GOING THROUGH SOME STUFF THAT IS NOT NORMAL....this is what I wanted to shout from the rooftops....I was soooo upset & confused......I HONESTLY THOUGHT I WAS DYING!!!

What had I done to deserve this.....Was I that much of a "bad person" to end up with such ill health....Who will hear me out & understand what I am going through....
These are the things that would rush through My mind on a Daily Basis.
I didn't know.....the doctors didn't know.....THEN WHO KNEW!!!

Finally, My symptoms were starting to fade off some.....and I went into the doctors one last time (by then I was feeling alot better), but this time is wasn't for a "sick visit", sorta.....this time I went in because I wanted the doctor to check my breathing out.
I didn't have a cold, but if you stood close enough to me...you could hear me "inhaling & exhaling" as if I was congested.....but there was no congestion in my chest......go figure!!!
The doctor sent me to have a Chest X-Ray and a week later, I was called into the office because of something they saw on the X-Ray.
It was a Black Mass......(shockkkkk).
Now the first thing that came to My mind was, "My father just died a couple of yrs. previous to Lung Cancer".....and I didn't smoke, so why is there a Black Mass!!??

I called up my mother crying and told her that she had to go with me to the doctors office so they can tell me what this Black Mass was.....I WAS SCARED STIFF!!!
When we go to the office, btw....time seemed to have gone soo far back in My Life....and soo fast ahead of My Life during the drive to the Doctors & back......We met with a Female doctor and she told Us....AGAIN, that there was a Black Mass on my Lungs, and it could either be Lung Cancer Or a Lung Disease called Sarcoidosis.
Neither One sounded Good to Me.
My head was spinning even faster than before.
I couldn't even talk.....My mother did most of the talking.
One question was, how soon can we find out....and the doctor said, as soon as I have the Biopsy of My Lungs...we will know where we stand.
Sigghhh......Heart rate Up.....Panic.....!!!

BIOPSY.....what the heck man!!!

Okay.....keep your cool naimah, you need to think some things through....Whew.

Jump to the Biopsy.....which was NOT a Fun Thing, AT ALL....and My sister warned me about it too, but I had NO CLUE it was going to be like THAT.
Anyway, I got through the Biopsy....now it was time for the results.
Oops, I jumped up ahead too far, lolol...I forgot to mention that she (the doctor) referred me to a Pulmonologist in the area.....he was a nice man, and showed he cared about my "discomfort".

Now, My mother & I went back to him for the results....btw, it was the longest week I had ever gone through.....
He told Us that it was in fact the Lung Disease Sarcoidosis.
I have never heard about this Disease before....but while waiting for the results day to reach, My mother was speaking to her sister and she mentioned that My aunt (my Moms brothers wife) had the same Disease.....so I had a few ph. conversations with her about it and she reassured me that it wasn't as bad as I was making it out to be and that you can live with it, but depending on the severity of the Disease....you may need to be on Meds. for the rest of your life.
Well as long as I was going to be ALIVE, I was good with that....lol.

He told Me that it was NOT Life Threatening....and that I could NOT die from it........Well what the heck did he know, low & behold....you CAN die from it, actually....I guess you die from Complications due to it....but still, YOU CAN DIE!!!
But back then, I guess he didn't have the information that is out today.
Today, you can Google Sarcoidosis....and it will bring you to several people WHO HAVE died from it, Or died as a direct result of it.
So don't tell me you can't die from Sarky......

When I got home, I called My aunt and told her....she sent me some Literature to read and boy was it helpful (I didn't have a computer back then....so I wasn't 'privy' to the amount of info. that I am today)...btw, My "New" doctor DIDN'T have ANYTHING for me to read about this Disease....it was soo Rare that not much was written about it.....NICE!!!
Anyway, he put me on a bunch of Steroids....in pill form (Prednisone) and through Pumps & Inhalers.
Oh....did I mention.....THERE IS NO CURE FOR THIS DISEASE!!!!....and the only Medicine that Helps....are the Steroids (Prednisone).
I blew up soooooo big in such a short amount of time....I could not believe that these meds. could do such a thing.
I mush say, the meds. DID work....I was back to My old self in no time.
He only had me on the meds. for two weeks, and I was glad about that.

After that, I had a few "Flare-Ups" every now & again.....Nothing serious.
Each time I would have one (flare ups) he would put me back on the Steroids for two weeks and again, I was back to normal.
And it went on like that for a few yrs.....with HUGE GAPS in between, I would be WELL for soooo long....that I thought maybe the Disease had "left the body" for good.
But it would ALWAYS show up, just to let me know...."Yup, Still Here", lolol.

Okay, that was several yrs. ago......NOW JUMP TO ABOUT 4 YRS. AGO.
THAT is when the Horror began.....AGAIN.
Only THIS TIME....it was staying around for a while, like FOR-EV-ER!!!!


To be continued.........

A "GD" day......

Twice today, I didn't take my meds. on time....aauuggghh!!!, I could just kick myself.

Whenever that happens, I feel the brunt of My mistake.....but today was a busy day for me, so Me forgetting was explainable.


There was a Huge Fire right across the street from My house this morn., so I was distracted by that (that was the first mistake for the day).....but I didn't wait too long before taking the meds., I was still "in the range" of taking them.

The second time was in the eve., and that time I was on the computer uploading pics of the Fire to a Forum that I Mod. for.
Normally I don't forget to take them....because of the consequences....but today's event threw me off a bit.
But I am back on track now.

Today was/is a "GD" day (Good Day), so there is not much to report in about.....but the nights not over yet, lolol....I don't go to sleep till after 1am, so there's still time for something to happen, lol.

It's good to have a Sense of Humor when "living with an illness", Or you will be DOWN all the time......and who wants THAT!!!

Rough Evening & Night

For some reason, this eve. & night has been a little hard on Me....I am praying that it is not an indication that this illness is getting worse.

I took My meds. around 7ish this eve.....and wasn't due to take more until 11pm Or 12am (which I took it around 11pm), but for some reason...it seems like I need to take more (it is 1am now), I am feeling the "fever" inside of My mouth (another Sarcky symptom)....and My eyes are feeling a little heavy.
This illness is soo unpredictable some times.....you just never know when something New is going to strike.

Well, I am going to wait it out for now....it is almost bedtime for Me any way...so we will see how it plays itself out.



Anywho.....Have a Good Night, and GOD Willing.....I will see you tomm.






Naimah

Hi....My name is Naimah.....AND I HAVE SARCOIDOSIS!!!

Sounds a little like someone who is admitting that they are an ADDICT doesn't it, lolol.
Well, in all honesty....if your illness has reached to the point that mine has, You Are an Addict...from all the different Meds. your 'Many' doctors have you on.....boy, who would have thought it!!

Now that I've got your attention, I think it is time to tell you a little about myself.

I am a 46 yr. old African-American Woman, living day-to-day with Sarcoidosis.....which is an Autoimmune Disease that can literally wreck havoc on Every & Any part of your body.

There are many Online Sites that will tell you "What Sarcoid is"....but I AM HERE to tell you "What LIVING WITH Sarcoid is like".....THE REAL TRUTH, not a few paragraphs that you see Online....which leave out the different TRUTHS about it, either by lack of Knowledge Or sheer Ignorance.
Take your pick.....

I was appalled, about how many Sites "Shovel" misinformation about this Disease, they give you alot of "clinical" mumbo-jumbo...stuff that you have to look up in a dictionary for....and even then you don't know what the heck they are talking about.
And then there's your doctors.....who THINK they know, but really....Most of them don't have a clue.
Now don't get me wrong.....there ARE some who "do have a clue"....but they are soo far and in between that you would be lucky if you could see one of them in your lifetime.
Sad isn't it.......

Anyway, the reason why I have started this Blog....is to "Bring Awareness" to what one plagued with "Sarky" (my nickname for the disease) Lives Like.
It is not a pretty picture....but it is one that Must be told, because it is such a Rare Disease....and up until a few yrs. ago, it was Not even known....but in the almost 17 yrs. that I've had it, the Awareness has Grown.


I pray that you will be able to tune in Daily....to see what develops from day-to-day.
I won't be on EVERY DAY posting things....but I will try My Darndest to have something for you to read EVERY WEEK.


THANK YOU.......& Have a Blessed Week!!!





Naimah