What is Sarcoidosis?? --- NHLBI

What Is Sarcoidosis?

Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. It can affect various organs in the body.

Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.

In people who have sarcoidosis, the inflammation doesn't go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.

Overview

Sarcoidosis can affect any organ in your body. However, it's more likely to occur in some organs than in others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).

The disease also often affects the eyes and the liver. Although less common, sarcoidosis can affect the heart and brain, leading to serious complications.

If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have sarcoidosis have no symptoms or mild symptoms.

Lofgren's syndrome is a classic set of signs and symptoms that is typical in some people who have sarcoidosis. Lofgren's syndrome may cause fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum (er-i-THE-ma no-DO-sum).

Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.

Treatment for sarcoidosis also varies depending on which organs are affected. Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has sarcoidosis needs treatment.

Outlook

The outcome of sarcoidosis varies. Many people recover from the disease with few or no long-term problems.

More than half of the people who have sarcoidosis have remission within 3 years of diagnosis. "Remission" means the disease isn't active, but it can return.

Two-thirds of people who have the disease have remission within 10 years of diagnosis. People who have Lofgren's syndrome usually have remission. Relapse (return of the disease) 1 or more years after remission occurs in less than 5 percent of patients.

Sarcoidosis leads to organ damage in about one-third of the people diagnosed with the disease. Damage may occur over many years and involve more than one organ. Rarely, sarcoidosis can be fatal. Death usually is the result of complications with the lungs, heart, or brain.

Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

Certain people are at higher risk for poor outcomes from chronic (long-term) sarcoidosis. This includes people who have lung scarring, heart or brain complications, or lupus pernio (LU-pus PAR-ne-o). Lupus pernio is a serious skin condition that sarcoidosis may cause.

Research is ongoing for new and better treatments for sarcoidosis.

February 2009

www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html

Naimah

Living With Sarcoidosis --- NHLBI

This is from the National Heart Lung and Blood Institute Disease & Conditions Index, and Online Site that I've found to have reputable information on Sarcoidosis..

As you remember from my first Post, I mentioned that there are a lot of Online Sites out there that are giving Misinformation about this Disease....but after reading what they have on Sarky....I am impressed, they were right on point with their information......so I decided to share some of their Articles with you.



Living With Sarcoidosis

Sarcoidosis has no cure. However, you can take steps to manage the disease. Get ongoing care and follow a healthy lifestyle. Talk to your doctor if you’re pregnant or planning a pregnancy.

Ongoing Care

Getting ongoing care is important, even if you don't take medicine for your sarcoidosis. New symptoms can occur at any time. Also, the disease can slowly worsen without your noticing.

How often you need to see your doctor will depend on how severe your symptoms are, which organs are affected, what treatments you're using, and whether you have any side effects from treatments. Even if you don’t have symptoms, you should see your doctor for ongoing care.

Your doctor may recommend routine tests, such as lung function tests and eye exams. He or she will want to check to make sure that the disease isn’t damaging your organs.

Discuss with your doctor how often you need to have followup visits. You may have some followup visits with your primary care doctor and others with one or more specialists.

Lifestyle Changes

Making lifestyle changes can help you manage your health. For example, follow a healthy diet and be as physically active as you can. A healthy diet includes a variety of fruits, vegetables, and whole grains.

It also includes lean meats, poultry, fish, beans, and fat-free or low-fat milk or milk products. A healthy diet is low in saturated fat, trans fat, cholesterol, sodium (salt), and added sugar.

For more information on following a healthy diet, see the National Heart, Lung, and Blood Institutes's Aim for a Healthy Weight Web site, "Your Guide to a Healthy Heart," and "Your Guide to Lowering Your Blood Pressure With DASH." All of these resources include general information about healthy eating.

If you smoke, quit. Talk to your doctor about program and products that can help you quit. Also, try to avoid other lung irritants, such as dust, chemicals, and secondhand smoke.

Emotional Issues

Living with a chronic disease may cause fear, anxiety, depression, and stress. It’s important to talk about how you feel with your health care team. Talking to a professional counselor also can help. If you’re feeling very depressed, your health care team or counselor may prescribe medicines to make you feel better.

Joining a patient support group may help you adjust to living with sarcoidosis. You can see how other people who have the disease have coped with it. Talk to your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Pregnancy

Many women who have sarcoidosis give birth to healthy babies. Women who have severe sarcoidosis, especially if they’re older, may have trouble becoming pregnant. In some cases, sarcoidosis may get worse after the baby is delivered.

If you have sarcoidosis and are pregnant or planning a pregnancy, talk to your doctor about the risks. Also, if you become pregnant, it’s important to get good prenatal care and regular sarcoidosis checkups during and after pregnancy.

Some sarcoidosis medicines are considered safe to use during pregnancy; others are not recommended.


www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_livingwith.html






Naimah

The Book....."Color Me Sensitive"

While surfing the net, I came across a book titled "Color Me Sensitive"....it is about a Woman's Journey to Find Herself through Disease.

I have yet to purchase it, but after reading what I have online about it....I think it will be my next purchase about Sarky (it is only $15. so I think I can swing that, lol).

The first, and only....book that I have on Sarcoidosis, is called: "Sarcoidosis....Medical Mystery Uncovered" by Sandra Conroy.
I purchased that book 17 yrs. ago after I was diagnosed.....and I often refer back to this book when something new develops inside of me.


This is what I read online about this book....


About the Book

"...in order to make a difference, in order to affect change, you must be willing to share at the deepest level."
June Saunders Grayson
Color Me Sensitive is a courageously candid and honest story of a woman who, confronted with a life-threatening disease, is forced to define what is truly important and real in her personal life. The disease, sarcoidosis, remains a medical mystery. Yet, in spite of the uncertainty and complications that faced her, June Saunders Grayson learned not to be defined by her diagnosis and battle with sarcoidosis; instead, fueled by the disease, discovers her true essence through love, family and most importantly, a solid faith in God.
Describing her dramatic and sudden diagnosis, Grayson takes the reader on a road map from meaningful turning points in her childhood to self-discovery realized in adulthood. Grayson’s conversational and engaging style of writing provides sometimes humorous, at times unsettling descriptions of her challenges with the disease, while illustrating internal personal turmoil, private, almost voyeuristic accounts of her troubled marriage, all while raising two young boys, and managing a demanding career. Visually compelling metaphors catapults the reader through the author’s spiritual growth.

"There is no doubt that I have exposed many layers of my life in this book," says June, 'but I feel that in order to make a difference, in order to affect change, you must be willing to share at the deepest level. That is what I hope and pray has been accomplished with this story."

Grayson says that she feels strongly that although her struggles continue, the disease was a gift to her. A gift that she believes will allow her to be a vehicle to make a difference.

Sarcoidosis is an auto-immune disease that can be debilitating and sometimes becomes fatal.

Sandra Conroy, founder and president of the National Sarcoidosis Resource Center and a sarcoidosis patient herself, provides the foreword for the book.

colormesensitive.com




Sounds interesting doesn't it.....(smile).







Naimah

"I Long for a Normal 24 Hours"

What is 'Normal' anyway.....I can't even remember a Normal Day.

Since the Birth of my Grandbabies....I've dreamed of being able to go outside and romp around the grass with them (when the weather gets warmer that is), but Honestly, I don't think that is going to be a Reality for me.....the Reality for ME is this:

I'll have to some how gate up the whole entire yard, park MY Butt somewhere Neutral (in a chair nearby), make sure I have "reinforcement" in case things get out of hand...like them trying to get out of the barricade I'd set up for their protection (and My "helper")....and try and act like I am playing along right with them......Now how & the heck am I gonna be able to pull THAT off, hhmmm......
they are smart lil kiddies....I think they may figure out what is going on, don't you.

While deciding what to write on this, I tried to think back at the times when I was able to 'do things'.....and I started searching, and it brought me back to when I was in my 20's I guess....boy, they were the days....I was soooo much more faster then, even in Thought.
I used to be able to remember sooo much, but now.....not soo much.

I remember getting up for work, rushing around to make sure things at home were good while I was out.....but now, I couldn't even see myself leaving out for 8 hours a day and doing Anything.....my thoughts would be on "needing to get home to take my meds. before I had a Flare Up @ work".....the focus would deff. be off of work.
Or the fact that I would have to get up extra, extra early in order to be @ work on time, because I would be in soo much pain trying to get dressed & everything.....it would just be a total disaster.

And because I used to be an Office Assistant, the whole sitting for a long time would not go over too well either.

I often find myself watching other people go about doing their Day to Day things....and say to myself "how much I miss that".
How THEY, should thank GOD for being able to do the little simple things in Life....like, being able to bend down and pick up their lil one without fail, Or be on their knees doing whatever one does on their knees, lol....THAT'S a biggie for Me.
Whenever I see someone on their knees....I cringe, because I know how it feels to be on mine.....YIKES!!!

I used to be a Gardener....and I loved it soo much, but those days are long gone for me....even if I took my pain meds. prior, after the work was done....I am going to be in some serious trouble later on.


I try to stay possitive about those things....I mean, there was a time when I COULD do them.....so I should be greatful that I DID engage in such things at one time, but at the same time....I miss them and I wish I could do them again......(sighhh).


I worry about My future with this illness......what it holds for Me.


I pray that it doesn't get worse to the point where I am Totally Dependent upon the ones I love......so I try to stay possitive!!!





Naimah

Can't sit for too long.....Can't move around too much.

Heyy ALL......


This Sarky thing is something else boy......

Your doctors tell you "you need to exercise, keep yourself moving" (because of the arthritis)....but if you move too much with Sarky, "IT" will let you know about it later on......so you figure, "I better sit for a while"....noooo, then if ya do that....it hurts like the dickens to try and get back up again.

If I go and do a simple thing like the Laundry Or Food Shopping, I better believe that later on in the day (Or night, depending on what time you were doing it)....you are going to be hurting.
I discovered this, Last Year....when I would come back from doing the Laundry in the morn.....I'd come back like I'd ran a Marathon......and half way through Food Shopping, I would want to quit...right then and there.....just leave my basket full of Food, and head out to the car & go home!!!

It is truly horrible......

Sitting down to watch a half hour tv program, would required me to get up every now & again....to "stretch my legs"....and that's ONLY IF I could get up in the first place.

I am sure those who have Sarky invading their Bones, Joints & Muscles can relate to what I am saying.....and even saying it, may not fully explain what We feel.

I often tell my husband....."I wish, just for ONE DAY...that you and others could Feel what I Feel"...not that I want anything bad to happen to them....I just need people to know on a personal level, what I go through each day and what I suffer with......so that they know I am not "playing" Or "faking"....because that is what I feel sometimes, like they think I am "putting on" Or something.

This is For Real ya'll.....and it is not a Game!!!!







Naimah

THANK YOU HUMMY......!!!!

Thank You, for Helping Me in My Quest to Bring Awareness to this Disease that "I" and soo many others Suffer with.....by making My Blog appealing to the Sight with Your Artistic Beauty.




I can't THANK YOU enough Hummy.....for Blinging out my Blog for Me.....You did a Wonderful Job......."Ya Really Hooked a Sista Up Gurl".

And if any of you need any help on yours.....SHE IS THE ONE TO CALL!!!, lolol.

LOVE YOU, LOVE YOU, LOVE YOU....for being so kind in helping me.....you are FAB.


May ALLAH (swt) REWARD YOU immensely for being the KIND & PATIENT person that you are......AMEEN.




You are INDEED a True Friend......

Naimah

Idiopathic Angioadema

This is the New Condition that I was diagnosed with a few Months ago (Nov.).

Idiopathic Angioadema.....

The "Idiopathic" part of it, just means.....THEY DON'T HAVE A CLUE OF WHY IT IS HAPPENING TO ME!!!


Now, what DOES happen is this.....basically, while sleeping....my throat closes up and cuts off my airway......!!!!

Can ya believe it.....I know, I couldn't either.....crazy right.

So.....All those yrs. I THOUGHT I was suffering from Anxiety Attacks....they were actually the Idiopathic Angioadema.....for 20 yrs. I had this, and called it something else.

Now mind you...I NEVER went to the doctors about these attacks in the past, so how was I to know what they were.
It wasn't until recently that I had had enough of them, that I needed to know what was wrong with me.

And in 2007, everything changed up with them.....I had on 3 separate occasions (while sleeping), that I woke up and while trying to get my composure of what was happening.....a surge of extreme pain started to form in the nape of my neck....and slowly headed up the back of my head, but with a force that you would not believe.

I thought for sure that I'd had a blood clot.....after the 3rd time of it happening....I went to the doctors, and he sent me to have a MRI done (and open one btw, lol)......the results were.....NOTHING....yup, there were no tumors, bumps, lumps Or anything else.....I was shocked!!!
But what the scan did show was that I had an Empty Cella.....which is common I guess in heavy set people.....and yes, I am on the heavy side...."so, what of it"!!! (tapping fingers on the desk).


So, since nothing was found....my PCP left it be.

Until....the next yr...in the middle of the night, I was awaken by the (what I thought to be)...."Anxiety Attacks".
But this time, I wasn't able to "get myself back under control".....things were taking a turn for the worse.
I started sweating, shaking, heart was pounding, I was real dizzy, I also felt as if I needed to move my bowels (but didn't), I was real nauseous and was dry heaving....and my head was pounding soooooo badly, that I couldn't think straight.

Now normally I would be able to calm myself down whenever I'd have those attacks....but like I said, IT WASN'T WORKING THIS TIME!!!
My husband asked me if I was alright.....and I told him, "I think you need to take me to the hosp.".....because by now, I thought I was having a heart attack.
Again....I WAS REAL SCARED.!!!

Three times I almost passed out (and I NEVER passed out before in my life)....once while sitting on the couch waiting for my husband to come downstairs and start up the car.....then again, in the car on the way to the hosp.....and last, while in Triage.
All I kept thinking was...."am I gonna die, am I gonna die"....I was soo scared.

I had called my oldest son to come and sit with his brother (he is mentally challenged) and he did.
So I was feeling happy about that....just knowing someone was with him (even though he was sleeping)....It made things easy for me to focus on what was happening.

They had me hooked up to sooo many things in the ER (ekg, post op, oxygen...etc.)....and my heart rate was sooo high, the doctor didn't want to send me home....so I was admitted.
And the whole time in the ER and up in my room....my head still hurt, the Morphine they gave me didn't even touch the pain....then I told them that I take Vicodin everyday for my Sarky pain, so they gave me a dose of that.
It worked some....but not fully.

I went in on a Friday night, and came home on Sunday.....and while there, they had me on High Blood Pressure Meds. and Anxiety Meds.
They didn't know what was wrong with me though.

Then on that following Tues., I went to my PCP for a followup....I told him what they THOUGHT was wrong with me and he said....."first, you do not have High Blood Pressure" (he has seen me enough to know that) and he took me off of those meds. (which I was glad, because they gave me headaches).....and he said, "you are not having Anxiety Attacks as well"......so doc, what IS wrong with me.

He told me, from what I conveyed to him....that what I have is the Idiopathic Angioadema.
And he explained to me, exactly what I'd experienced All those yrs.....and mind you, I didn't tell him the basics of what I'd gone through for 20 yrs.....but from what lil bit I did tell him, he figured it out to be that.

He said, while sleeping....you throat closes up on me, causing me to wake up in a Panic (thinking my airway was closing)....when he was telling me this....I was soooooo relieved, because I knew it had to be more then any Anxiety Attacks.

It All made sense Now.......

And because I was waking up in a Panic, My heart rate would skyrocket...thereby causing my blood pressure to rise, and that is where the Pain in my head was coming from.
And the night that I had the really bad attack, because my heart rate was sooooo high....it triggered a host of other things to happen, thereby not allowing me to calm myself down....as I normally would.


My children were more scared than I was.....and my husband, well...he started crying and that made me feel bad (actually, they ALL were crying).....I didn't realize that it had that much of an effect on my family.

I notice that I get them more so, when I have been under a certain amount of stress.....so my family and I, are trying to do everything to keep my stress level as low as possible.....but let me tell ya, THAT IS HARD TO DO!!!!
I have sooooooo many things going on in my life & household right now, couple that with me going through the "change" and the Hormones are going in every which & what way.....that it is almost impossible to NOT have any stress.....but I am trying just the same.

What DOES keep me "focused", are my Grandbabies (Maarsy & Poppy)....they are My Light in these some times Dark Days....and My Faith in GOD & Prayers, without All of those things.....I WOULD BE A BASKET CASE!!!

So I am on these meds., that btw....don't make sense to me that I should be taking them for THAT....but since I've been on them, I've only had about 3 Attacks/Episodes, so it Must be working.....Alhamdulillah.
And I have been under some Major, Major Stress in the past Month Or so....so I'd say, THEY ARE WORKING!!!

When I pulled the name up online....in one part of it, it said that those with an Autoimmune Disease can have this condition......uummm, BINGO!!!.....it has Sarky written All Over It, lolol.

This is what "I" believe......regardless.




Naimah

The Meds I am on

For the past yr.....I have been on different Meds., some worked....but most didn't.

Here is a list of them, and I will try and put them in the Order that they were given to me......but in the end, I will post what I am on NOW.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
March 3, 2008

Naproxen EC 500mg tab TEV --- For pain.....didn't work.
Tramadol HCL 50mg tab TEV --- Narcotic pain reliever.....also didn't work.

I took both meds. for a week.....before discovering they were not the ones.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
March 13, 2008

Meclizine 25mg tab PAR --- For dizziness, and I still take it till this day....but only when I need to.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
April 2008

Hydrocodone-APAP 5-500 TABLMCK --- For pain.....worked, for a min....but then I had to get a stronger dose (later on in the yr.).


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
June 6, 2008

Hydroxychloroquine 200mg TMYL --- Hydroxychloroquine is also used to treat symptoms of rheumatoid arthritis and discoid or systemic lupus erythematosus.....at the present time, I am not on it (I felt it didn't work back then)...but I may try it again in the near future.

Choline Mag Trisal 750mg TCAR --- Choline salicylate/magnesium salicylate is used to relieve pain from various conditions. It also reduces pain, swelling, and joint stiffness from arthritis. This medication is known as a nonsteroidal anti-inflammatory drug (NSAID)......I no longer take this medicine.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Nov. 2008

Alprazolam o.25mg tab MYL --- For Anxiety.....I was prescribed this med. when I was hospitalized in that Month....but i don't take it any more.

Metoprolol TARTR 25mg tab MYL --- For Heart problems....also from when I was in the hospital back in that Month......and I am no longer on that as well.

Hydrocodone APAP 5-500 --- Same as above.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
December 2008

Hydrocodone APAP 10-500 TABQUA --- Upgraded to this because the last ones were not strong enough.

Doxepin 25mg cap MYL --- Doxepin is used to treat symptoms of depression and/or anxiety associated with alcoholism, psychiatric conditions, or manic-depressive conditions......believe it Or not, I was on this medicine because of another condition I developed....and my PCP said that it will help with it......I am still on this med.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Jan. 2009

Doxycycline HYCLATE 100mg WSW --- Doxycycline is used to treat many different bacterial infections, such as urinary tract infections, acne, gonorrhea, and chlamydia, periodontitis (gum disease), and others.....This is a medicine I was suppose to take for a Month for a bad case of Acne.....but it made me really sick, so my doctor put me on another antibiotic instead.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Feb. 2009

Cephalexin 500mg cap TEV --- This is the antibiotic my doctor prescribed for me in place of the above med.....and I took THIS for a Month.

Hydrocodone APAP 10-500 TABQUA --- For pain, every 4-6 hrs. (let me tell ya, I would never reach 6 hrs. between meds....I would end up in the hosp. if I had to wait that long).

Doxepin 25mg cap MYL --- Still on this medicine for another condition.....Idiopathic Angioadema.

Calcium Citrate plus Magnesium & Vitamin D --- I lack Calcium, which was discovered back in Nov. when I was in the Hosp.

Stool Softener --- Self explanatory, don't ya think...lol.

Zantac 75 --- For the Angioadema.

Non-Drowsy Allergy Relief --- For the Angioadema........yeah, go figure...lol.



Whewww.....I think that is it, but if I left anything out....I will be sure to post them.






Naimah

CONTINUATION of....The Begining!!!

Up till 4 yrs. ago, I was only having symptoms Every Now & Again....but that All changed back in Sept. 2005.

It was right after Our Family Reunion that "I" almost singlehandedly put together All By Myself (July of 2005).....and I think THAT is why Sarky came out of remission.

All the stress of trying to get everything done ON TIME & DONE RIGHT, was wayyyyy too much for me.
I remember waking up out of my sleep several times a week, with what I thought was Anxiety Attacks (I will get back to you on what they REALLY were).

This went on for Months....

Anyway.....time went by, and Reunion was a success....and everything went back to Normal.....so I thought.

In Sept. of 2005, I had been babysitting my Great Niece every morning since she was 6 wks. old...and it was time for her to go home, I walked her Mom down the stairs to her car (we lived next door in the upstairs apt at the time)....and when I was on my way back up the stairs, IT HIT ME....like a Ton of Bricks!!!

I was out of Breath like you wouldn't believe.....I grabbed my chest, thinking that would make a difference...and when I got inside, all I could do was throw myself on the counter and lean over it....trying to catch my breath with every pause.

It was horrendous.

I thought I was having an Asthma attack Or something....my chest was sooo heavy, I just couldn't think of what was wrong.

I felt feverish, weak, sweaty, cold.....and then I thought...."maybe it is the Flu".

My husband came out of the bedroom and asked me if I was alright.....and I was able to get out "Nooo, I don't feel soo good".
He led me to the bed and I just layed there in a fetal position....rocking back & forth.
We had some Flu Medicine (over the counter) in the cabinet, so he prepared some for me, along with some tea.......it helped.

But something strange was going on....it lasted wayyyyy longer than any Flu should have lasted.....and I wasn't getting better, I was getting Worse.

So one night I called my Mom and was telling her about my health and she said to me..."do you think it is the Sarcoid"??
It was like I had a New Revelation hit me Or something.....I jumped up and thought....."THAT'S WHAT THIS IS.....SARKY".

I ran to get my book on Sarcoidosis, by Sandra Conroy...that I purchased a when I first found out I had this Disease.
In it, it showed ALL the symptoms that I'd had for the past few weeks.....IT WAS SARKY.

It had been soooo long that I'd had any symptoms, it didn't even cross my mind that it would be that.
I was relieved...but at the same time, I was scared....scared because Sarky hadn't felt THIS WAY before....I hadn't experienced symptoms like this before, the other times Sarky was minor Joint Pain, Muscle Pain, Eye Problems, Problems with my Nervous System....etc.
But this time, whatever was going on.....PUT ME ON MY BUTTON!!!

No Energy, No Zest, Not Wanting to Eat (and THAT is deff. not Me).....All around, everything was just different.

Upon My husbands request (and after going to a Rheumatologist my PCP suggested)....I tried the Holistic Route, and for about 6 Months I eat very little Meat, lots of Veggies & Fruits.....but it didn't work.
So I decided to try OTC Medicine.
And THEY DID WORK......so, for the longest time (months turned into yrs.), I was on different OTC Medicine for Flu Like Symptoms.

I guess I was on them soo long that they stopped working, so I decided to go back to my PCP (Primary Care Physician).
After telling him my symptoms....he referred me to a Rheumatologist.
The same Rheumatologist that I was sent to 3 yrs. prior (but I stopped going to him to try the Holistic Route).

He wasn't happy with me at all....He told me back then, that he wanted to see me every 3 months....but like I said, I wanted to try doing it Holistically.....and I let him know that.....and he said, "and now you are here by me again"....meaning, yeah....it didn't work did it.

I've been to see him now for a little over a yr.....every 3 months, like clock work.
He is the one who prescribed me the pain meds. I am on now.....THANK YOU DR. LAINJO.

I know I've jumped from here to there with this, but if I was to post EVERYTHING that happened, from Me being in remission till now.....I would be writing forever, lolol.
So I am doing alot of "paraphrasing" here, lolol.

My life, from Sept. 2005 till now....has been one roller coaster ride after another, and at times I sit back and wonder "when am I gonna be able to get off".





Naimah

Oh the Pain....the Pain!!!!!

This morning was not so good....it wasn't Horrible, but it wasn't good either.

As I got my son off to school, I went upstairs to get some socks to wear because I decided to stay downstairs and watch a little bit of TV instead of staying up in my warm bed.

It wasn't cold downstairs, but for some reason my feet were chilled.
I layed on the couch, put the channel to what I wanted to watch (Or have watch Me, lol) and slowly drifted off to sleep.

But then, out of nowhere...I was awaken with pain, my legs & feet were hurting....to the point where I could not fall back to sleep.
I took my meds when I woke up this morn. (around 7:25), so it wasn't like there wasn't any pain meds inside of me.....so why was it not working!!!

It was well past the half hour that it takes for the meds. to kick in.
I was soooo tired, and I decided to switched positions....Didn't work, then I tried "rocking" (one of my favorite things to do since birth, lol)....but that didn't work either.

I couldn't take any more pain medicine...I'd had enough already.
Usually it gets like this when the weather is real cold (yeah, something that I never believed as a teen & young adult...but I do NOW)....but it wasn't even cold, not outsied and not inside either.

So what was making the pain so unbearable.....

Anywho....since there was nothing that I could do, I decided to 'grin & bare it'....and I guess I was sooo exhausted, that I fell off to sleep anyway.
But I would wake up every now & again with really bad pain in my legs & feet.

By time I woke up for good (it was around 12pm)....the pain was throughout my entire body....I didn't think I could even stand up!!!
I sat for a few minutes, stood up...and almost fell back down.....THE PAIN WAS TOO MUCH FOR ME!!!

I tried it again....because by then, I NEEDED to get up those steps.
I stood on the landing and thought....."HOW THE HECK AM I GOING TO DO THIS".

As of late, I have needed to use my cane to get from point A to B....but for some reason, I didn't think I would need it....so I left it in my room next to my bed.

I guess I figured that the meds. would have worked for me by then....but nooooo.

This is how it went: Up One step.....then pause....Up Another step....then pause again....by time I got to the 3rd step....I thought I was going to have to sit down on it, the pain was really bad.
And my extremedies were feeling weak....so I was afriad to even hold on the banister for fear I might fall.......
All this, to have a "bathroom time"....(shaking head from side to side).

Finally, the pain wore off enough for me to take the rest of the steps, and when I reached the top....I was out of breath sooo bad, I just plopped down on the toilet to catch it.

Times like these, you wish you had someone to help you....but I was by myself.

When I was finished in the bathroom, I'd realized that it was once again time to take my next dose of pain meds.
So off I was, down the steps.....slowly.

Two-Stepping it all the way down....(The ONLY way of going down the steps for me).

It usually takes almost a half hour for the meds. to work....so, knowing that...I decided to just "chill" on the couch till then.
By the time it kicked in....my son's Medicaid Coordinator had come for her visit.

You would have never known that I had gone through ALL that pain just a half hour prior.....I was talking up a storm with her, lol.

THANK YOU ALLAH FOR PAIN MEDICINE........

Patience And Gratitude

by Ibn Qayyim al Jawziyyah chapter 7
Patience in adversity and in situations beyond man’s control
Trials such as the death of a beloved one, sickness, loss of wealth,etc.,fall into two types: adversity beyond one’s control, and adverstiy caused by action of another human being, such as slander, beating, etc.
In facing situation that are beyound one’s control, peopel may have any of the following reactions:
1. Feeling helpless and discontented, panicking and complaining.
2. Responding with patience, either for the sake of Allaah or a a sign of human strenght.
3. Accepting the situation with thanks and gratitude. This is even higher than accpetance, because in this case a person sees the adversity as a blessings and thanks Allaah for putting him through it.
4. Problems and adversity that befall a person at the hands of other may be faced with any of the following reactions:
1. He may choose to forgive and forget.
2.He may decide not to take revenge.
3. He may accept the decree ( qada’wa qadr) whilst recognizing that the perosn who harmed him was a wrongdoer, yet the One Who decreed that this harm should reach him at the hands of the wrongdoer is not a wrongdoer.The harm caused by people is like heat and cold: there is not way to prevent it happening and the one who complains about heat and cold betrays a lack of wisdom. Everything that happens, happens through the decree (qadaa’ waqadr), even though there are many different ways and means for it to happen
4. He may treat well the person who mistreated him. This attitude has many advantages and benefits, which nobody can know the entirety except Allaah.

Invocation for someone you have spoken ill to:
230. Allaahumma fa’ayyumaa mu’minin sababtuhu faj’al thaalika lahuqurbatan‘ilayka yawmal-qiyaamati.O Allah, whomever of the believers I have abused, give him the reward of a sacrificial slaughter for it on the Day of Resurrection.

Taken from Fortress of a Muslim

"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.........