Sunday, March 29, 2009

I Want to Apologize


I want to apologize for My absence in the Past few weeks....I know I promised to have something for you to read EVERY WEEK, but not Every Day.....and I have "Laxed" in that, so again....I apologize.

The reason why I was "invisible", was because of several reasons.
One being Sarky was playing some Major Tricks on me...thereby having Me confused like you wouldn't believe.

I THOUGHT....Sarky was leaving Me, Or better yet....going into Remission....but I was Fooled....."Heyyyy, it wasn't April Fools Day yet".

What happened was this.....

One day, I noticed that the Pain in My hands were not as prevalent.....and from the waist Up, Sarky was there.....but not like before.

I didn't mention it to ANYONE, because I just needed to see for Myself.
Then, a few days into it being like that.....I couldn't hold it in, I called My Mother and told her that I HAD A FEELING SARKY WAS GOING INTO REMISSION.....and I think you could hear the excitement in My voice.

I've Always dreamed of One Day THAT Happening....but didn't think it really would......and guess what,.....IT REALLY DIDN'T!!!!

Once Again, Sarky got the best of Me and Played the Dirtiest Trick in the Book....."Hide & Seek".
In "Chronic Land"....you just don't Play that Game, it is NOT funny in the least......I almost started into a TINY Depression....But I pulled Myself back together again and decided that "it just wasn't My Time for "Sir Remission" to visit.

Slowly, but Surely.....Sarky worked it's way Back to the Upper Part of My Body (fingers, hands, elbows, neck....).....My Fingers are soo swollen, that you could literally see the difference.....and THEY HURT!!!
My Elbows.....aaauugghhh, I can't even lift up My Grand babies Now.
Basically.....Everything is back to Normal.....Normal being, Painful Joints, Muscles, etc......the Whole Entire Body!!!

The other reason for My absence is My Family.....(daughter & her family), they are on a search for an Apt....and I've been busy taking them to different places and such.
Also, to try and take My thoughts away from Sarky.....I've started a Patio for My front yard.
It is really small....and I am just in the beginning stages of it.

It helps alot....but then I get reminded of Sarky later on when the Pain sets in.

Well.....'What are ya gonna do' (throwing hands up in the air).

Hopefully I will be on again with My Post, to keep this Site Alive...lol.
It will probably be Once Or Twice a Week since I will be busy with the Yard.....but I am determined to Post SOMETHING....even if it is just to say "heyyyy", lolol.



Thank You for Your Support.....and "Post" to you soon!!!

Tuesday, March 24, 2009

Sarky playing Tricks on Me....aauugghhh!!!

For the Past week Or so, I have been led to believe that Sarky just may be on it's way into Remission, but.....NOT!!!

I kind of don't have much time to fill you in on it at this moment...but I will deff. swing back through here in a "min." to give you My updates of the Past Week.



See ya soon....
Naimah

Wednesday, March 18, 2009

Oh Shoot....I ran out of Ink.

I think I mentioned that I plan on Copying some of the contents to My Blog....and then have them placed inside of My File at My Doctors.

This idea, came from Mother...."Thanks Mommy".
But when I tried to start the Copying Process...I realized that my ink is Low, although it wasn't brought to my attention by my computer (which it normally does)....this time, I found out by trying to print something out.

Well, My husband needed something printed out as well....so I called him and informed him that I didn't have enough ink left, so he decided he would buy some tomm. when he is off....."Yessss, the Copying can resume", lolol.

Thank You Babe!!!



Naimah

"Release & Relax".....My NEW Motto!!!

My NEW philosophy is to "Release & Relax"...lolol, just came up with that as I was posting to a Thread that was started in the Support Group I belong to.
The Topic had something to do with Sarky affecting you in a Major Way (Or something to That effect).....Or maybe it was "how Sarky effected you in a Major Way"....lolol, dang....must be a Sarky Moment, because I can't remember what the Title was exactly...lol.
Well after I posted My reply....I decided to add at the end, that I needed a moment to Vent at times, because if I didn't.....the consequences would not be Kind.
You shouldn't hold inside of you, All that is bothing You....You need to Release it from time to time....Or else.

This is an excerpt from what I wrote:

".....Living with a Disease that takes your Quality of Life darn there away from You....it Will take you to a place that you would Rather Not Be.....that is only Natural.
But as long as You KNOW you Need to "bring it back home again".....than It's All Good.

In other words, go ahead and 'Vent'....but just know that...#1, it could be worse....and #2, You are still alive and Living, and a lot can still be done with knowing That.....so then you take it from there.
But give Me that Moment to "Vent"....because if I don't....than there may be other "situations" to arise that will make matters even Worse.....and NO ONE will want That, I promise You.

"Release & Relax"....Yeah, That will be My new Motto, lol....."


We SHOULD be Grateful for a lot of things We Have....and some We Don't Have...but that is not to say that We can't have any Human Emotions along with the way....
And like I said, as long as We Know...WE NEED TO "Bring it on Back", it is All Good.


So...Go ahead, Release a bit....and then Relax, and give it to GOD....where it belongs!!!
You will deff. get some insight on what to do....and where to go from there, so as Not To carry on with your "Pitty-Party" for too long.
Remember Those that are Less Fortunate than You....and Pray for Them, as you are Praying for Yourself!!!!

I also mentioned that, I've always had it in me to be Grateful....especially since my youngest son was born.....but before That as well.

He was born almost 21 yrs. ago and weighed in at a mere 1lb. 5oz.
The day after his birth....he had a Blood Vessel burst in the back of his head, which in turn caused a condition called Hydrocephalus......"Water on the Brain".
He is Now Mentally/Physically Challenged and has a History of Seizures (they are still there inside of his head, but the medicine he takes is keeping them at bay....).....he has to take Meds. for them (along with a few others) for the rest of his Life.

Now if THAT doesn't bring to your attention, that you need to be Grateful for what you Have....than I don't know what does.

So yeah, I am Grateful that Sarky hasn't gotten to a point that some Have It...in their Spleen, Heart and other Major Organs....but at the same time, when I am feeling like CRAP....I NEED TO 'Vent' alittle.....and you can be Very Sure, that REALITY sets in with the Quickness!!!!...and I "Bring it back on Home" again.





Naimah

"Sarky" Book....and the Check Points begin!!


Back when I was first diagnosed with Sarky....I purchased a Book by Sandra Conroy called 'SARCOIDOSIS Medical Mystery Uncovered'...it is My Reference Book from way back then, lol.
It has a lot of Good things inside....but I must say, I think I need to Upgrade to her latest Book...lol, and soon.....I mean, this one IS 17 yrs. old now, lol.....Or 18, because it came out in 91' and I was diagnosed in 92'.

Soon as I got it in the Mail, I started reading it....and the check marks went a flying...lolol...there were soooooo many symptoms that I had, that was in the Book....it was sooo amazing to Me, to see All the different Symptoms....and some of them I didn't have.

Then it got to a part where People who Suffered with Sarky, were giving Their Testimony's if you will....and then the SHOCK came over Me.
I could not BELIEVE what these people....My People (my fellow Sarky Sufferers that is)....were going through.
This One, explained how upon coughing, parts of his Lungs were coming Up...Now THAT scared Me to death.....All I could think of was "is This going to happen to Me".
I can't remember All of the Testimony's, but THAT ONE stuck out like a sore thumb to Me over the yrs......That is one symptom I wanted to Avoid like the Plague.

Anyway, the Check Points are All over this Book...and I am sure that upon going back to Refresh Myself with it...I will find Many More that will Need "the check mark".





Naimah

Monday, March 16, 2009

Stress, Anxiety & Depression....the 3 Amigos!!!



In one of the Support Groups I belong to, one of the Discussion Boards have a Topic called Emotional Support.
Under that Heading it states that….."many Sarcoid patients experience Stress, Anxiety & Depression"…..and THIS was My response to THAT:


“Well of course We DO….Who wouldn’t….after being Thrown around inside a Barrel from side to side, then tipped upside down Out of said Barrel and dumped on the Ground in Disarray…..Only to have that Very Same Process repeat itself….Over, and Over, and Over again”….Yeah, I would say You are Right & Exact.

Our Lives ARE NOT as they were before….and the people around Us can attest to that…..Who wouldn’t be Depressed Or Stressed Out….and even Have an Anxiety Attack here Or there.
THIS Disease is Silent at times, it Thrashes You around like it Owns You…..”Like IT’s the Master, and YOU the Slave”.

It takes away from You, Your Innocence….and leaves you to figure out Why!!!

It’s NOT Your Friend, and Nor should it be considered as such…..

So Depression…..Yeah, it happens.
And Anxiety….it happens too.
……and let’s Not forget good ol’ Stress…Yeah, We even get that also.

Now don’t You think We have the Right to Own That!!!!.....from what Sarky puts Us through….there’s a heck of a lot We COULD Own.

I also have Faith in GOD….and I know that HE will get me through each and every one of them…..(GOD Willing).


You can throw in a Few “VENTS” if ya like as well…..lolol.
Had Mine just Now….lolol…..Whewww, took a lot out of Me for a Minute there.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


I would like to add, that this New Support Group I belong to Now…..IS GREAT!!!

I am soooo glad I was Guided to IT….and the “Sarky’s” on there are soooooo Supportive!!!!!

Heyyyy….Where have you All been All My Life, lololol…..THANKS GUYS, for being there for Me…..You know….What I know, and THAT….is very important in Sarky World.




Naimah

Saturday, March 14, 2009

Oops....Spoke to Soon!!!



Yeah....uummm, I spoke to soon.....the pain is, as I type this.......Creeping up my legs.
It feels as if something sharp is scratching them up & down.

So...THAT means, even the Littlest Movement will cause me Pain afterwards.....

Now you tell Me....Where do you get relief from something like that (light movement)....and mind you, I wasn't even walking fast...for crying out loud, I had my 15 Month Old Granddaughter walking with me...so how fast could I have been walking...!!!




Naimah

Today's Day



I took advantage of the Beautiful Weather we had Today, and I went for a Small Stroll with my Granddaughter.....(she is only 15 Months old....but a lil bit-fire in her Own right, lol).
It was her First Time being out WALKING, since she started to take her tiny steps when she was 10 Months old.
I waited a long time to be able to take the "Grands" out with me....on a Stroll around the Block.

She really enjoyed it a lot, as did I...lolol.
I thought for sure she was going to be a little timid about being outside Walking.....but she wasn't.
We did a slow stroll, just enough for her to have her say of how she wanted to walk, lolol...and it was just enough for Me, not to have Over Done It.

I doubt that I will have any repercussions from it later on....but I am keeping my eye out for it, lol.

I can't wait till the Weather REALLY starts to get warm....so that I can do a lot more STROLLING WITH THE GRANDS, lol.


Have a Nice Day!!!!





Naimah

Sarcoidosis.....The New Lupus!!!



I call it the New Lupus purly because there are soo many symptoms that mimic Lupus, that it gets mistaken for Lupus.

It is Rare, like Lupus USED TO BE....but as of late, Sarcoidosis has "grown in popularity", lolol....it is really not funny, but heyy...sometimes you just have to laugh.

I have been asked many times...."You sure you don't have Lupus instead", lololol....and I have to tell them "No, it is not Lupus"...."but what you've explained to me, sounds just like Lupus"....lolol, I know...I know, I have been told that too many times....but yeah, it's "Sarky"....not Lupus.

Soo many of Us have been Misdiagnosed....and some times, several times...before We finally get the News that it is indeed Sarcoidosis.
It may take years before a confirmed Diagnosis of "Sarky" is in front of You.....and boy, it is a Horrible Wait.




Naimah

SSI Or SSDI

I have yet to "take the steps" to try for SSI Or SSDI....and I think that is because of All the Horror Stories you hear about the whole process.

The other reason is, I have a strong feeling I will be denied.

Another one being that, I FEEL I don't have enough Medical Information Documented on My illness....although I've been going to My Rheumatologist for a yr. now (I see him every 3 months)....I still feel like not enough is being written about how this Disease is effecting me.
So I decided, on My next Doctors visit...I will set the docotor down, and give him an ear full of My complaints.....this way, he can have more than "I have a pain here....And I have a pain there"....I will actually have stuff written down on paper of what I've been going through on a Daily Basis since He's last seen Me.

Having a Blog is helping Me in that area as well....if I don't have it written down, I will deff. forget about it....this way, with the Blog...all I have to do is refer back to IT....and go from there.

I pray that by the time I DO make that move to Address My Concerns with the SSI Or SSDI Committee....there will be enough documentation about Me, to be Approved.

Now I know it is a Long Shot....but it is one I HAVE TO take in the Near Future.How about YOU....any Horror Or Success Stories You'd like to Share??!!!





Naimah

Wednesday, March 11, 2009

More Info. from FSR (a very good site)

SYMPTOMS

Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. An organ is affected when granulomas (masses of inflamed tissue, or lumps) form and cause an abnormality.

Many sarcoidosis patients do not have any symptoms. Some have only one symptom, while still others have several. General symptoms caused by the disease include fever, tiredness or fatigue, weight loss, night sweats and an overall feeling of ill health. Other symptoms typically depend on which organs the disease affects.

Symptoms

Some organs are affected more often than others. Sarcoidosis occurs most often in the lungs. It also commonly affects the skin, eyes, lymph nodes and liver. Less commonly, it affects the spleen, brain, nerves, heart, tear glands, salivary glands, sinuses, bones and joints. Rarely, it affects other organs, such as the kidneys, breasts and male and female reproductive organs. Often, the effects of sarcoidosis in an organ are so mild that there are no symptoms and the organ continues to function well.

Lungs: The lungs are the most commonly affected organ in sarcoidosis. Ninety percent or more of people with sarcoidosis have lung involvement, whether they have symptoms or not. Common lung symptoms are dry coughing, trouble breathing, wheezing, or pain with breathing, chest pain, tightness, or discomfort and coughing up blood, which is rare, especially in the early stages of sarcoidosis.

Lymph Nodes: Lymph nodes are glands found throughout the body that make and store white blood cells. When sarcoidosis inflammation targets these glands, they become enlarged. Swollen lymph nodes can be uncomfortable, but they rarely cause medical problems unless they press on organs or blood vessels. Most commonly, it’s the lymph glands in the chest that are affected. Some of the other places you might notice enlarged lymph nodes (they appear as swollen lumps) include your neck, under your chin, in your armpit and in your groin.

Spleen: The spleen is a large organ on the left side of the body under the ribs that produces and filters red blood cells and some types of white blood cells. Along with the lymph nodes, the spleen is part of the lymphatic system, which regulates blood cells and plays a role in immunity. Sarcoidosis of the spleen does not usually cause symptoms. If you do notice symptoms, they might include pain or pressure on your upper left side under your ribs or feeling tired.
Liver: Sarcoidosis granulomas can cause the liver to enlarge. The disease rarely causes serious liver problems, however, and most people do not even realize it when their livers are affected. If you have liver symptoms, they might include fever, feeling tired or fatigued, itchy skin, jaundice, which causes your skin and eyes to look somewhat yellow, pain on your upper right side under your ribs.

Heart: Some people with heart involvement might notice symptoms, but many people will feel nothing, even in late-stage disease. Because heart problems can be very serious, everyone who has sarcoidosis should be screened for cardiac involvement. Sarcoidosis can cause the heart to pump weakly. This results in such symptoms as shortness of breath, swelling of the legs, wheezing and coughing - although these can be a sign of lung problems too. Sarcoidosis also can affect the heart’s electrical pacing and transmission system, which tells the heart when to beat. This can make the heart beat too fast or very slowly or skip beats. Symptoms of an electrical-system problem include palpitations (a fluttering sensation of rapid heartbeats), skipped beats and, rarely, fluid buildup in the lungs or sudden loss of consciousness. Find out more about cardiac sarcoidosis and its symptoms.

Brain & Nervous System: The nervous system includes the brain and all the body’s nerves, and it may be affected by sarcoidosis. The disease can cause a mass of granulomas in the brain or meninges, which are the membranes that cover the brain. The disease also can affect one or more nerves anywhere in the body. Most often, it affects the nerves of the face. Symptoms of the disease in the nervous system vary. If there is a mass in the brain, symptoms can include headaches, visual problems and weakness or numbness of an arm or leg. When sarcoidosis affects a facial nerve, it can cause one side of the face to droop. This may be the first symptom that someone has sarcoidosis. When sarcoidosis affects the spinal cord, it can cause weakness or even paralysis of the arms or legs. When multiple nerves in more than one place are affected, the disease can cause weakness, pain, or a "stinging needles" sensation in those areas.

Skin: Sarcoidosis of the skin can result in rashes or various types of skin lesions. If you have one of these skin problems it can be a clue to how serious your case of sarcoidosis is. One type of lesion is called erythema nodosum which causes raised, red, and tender bumps to form on the skin, usually on the front of your legs. Nearby joints are often swollen and painful. Erythema nodosum usually goes away on its own in 6 to 8 weeks, even without treatment. Having it is a good sign that you might have the type of sarcoidosis that also goes away on its own after a few months or years. Lupus pernio is an uncommon skin condition that causes hard, reddish-purplish bumps to form on your cheeks, nose, lips, and/or ears. These bumps do not go away on their own and often come back when treatment is stopped. They are usually associated with chronic sarcoidosis. In some cases, the sores are disfiguring and can damage underlying cartilage and bone. Other lesions may appear as bumps on or under the skin, rashes, sores, scaling, and/or changes in old scars or tattoos that do not go away and are rarely painful or itchy. These skin problems are also associated with chronic sarcoidosis.

Bones, Joints & Muscles: Musculoskeletal sarcoidosis (musculo=muscles, joints and bones=skeletal) can result in a number of symptoms. Early-onset arthritis, which is joint pain, stiffness, and/or swelling that usually occurs in the first 6 months of the disease, begins suddenly in one or both of the ankles and/or feet, and sometimes involves the knees, toes, fingers, wrists, and/or elbow joints. It often accompanies erythema nodosum, and it usually goes away on its own in a few weeks or months. Late-onset arthritis, which usually occurs 6 months or more after sarcoidosis develops, is less painful and affects fewer joints than early-onset arthritis (usually the knees and/or ankles, or sometimes the fingers or toes), and is often associated with chronic skin symptoms rather than erythema nodosum. This type of arthritis can last a long time or a lifetime, or it may come and go, but it usually does not go away for good without treatment like early-onset arthritis does. It can cause permanent joint damage and should be treated even when it is not painful. Sarcoidosis also can affect the bone marrow (soft, organic material that fills bone cavities), which produces blood cells. This can result in anemia, in which there are too few red blood cells, or a lowered number of white blood cells. Red blood cells are needed to deliver oxygen to the body; white blood cells help fight infections. In muscles, sarcoidosis may cause muscle aches or muscle pain (also called myalgia) or muscle weakness. The disease can also cause bone cysts, which are rare.

Eyes: Common symptoms of sarcoidosis in the eyes include: burning, itching and/or pain, dryness, tearing, red eyes, vision problems such as seeing black spots (called floaters) and blurred vision, sensitivity to light and small, pale yellow bumps on the eye. A condition called uveitis, which is inflammation of the membranes (uvea) of the eye, can result in many of these symptoms. Rarely, glaucoma, cataracts and blindness can occur if uveitis goes untreated. As a precaution, a routine eye examination performed by an ophthalmologist is recommended for anyone with suspected sarcoidosis. It is a good idea to schedule them annually for several years after your diagnosis, and routinely as recommended thereafter.

Kidneys & Urinary Tract: Sarcoidosis rarely attacks the kidneys directly. However, the disease can cause the body to overproduce vitamin D, which in turn causes the body to absorb too much calcium and can lead to kidney stones. Although they are uncommon in sarcoidosis, kidney stones can be painful when they break loose from the kidney and pass into the bladder, so it is a good idea to ask your doctor to check you for excess calcium before kidney stones have the chance to develop. Symptoms of kidney stones you might notice include pain in your back or side, or an increased urge to urinate.

Salivary Glands: Inflammation in the salivary glands can sometimes cause painful dryness in the mouth. When sarcoidosis affects these glands, it can make your cheeks look swollen.Sinuses: Sarcoidosis can also cause inflammation of the sinuses (called sinusitis). Symptoms include a runny nose, stuffiness, and sinus pain or headache. The sinusitis associated with sarcoidosis is often chronic and can be very troublesome, although it is rarely serious.

Mental Health: Research shows that more than half of people with sarcoidosis symptoms also show signs of clinical depression. Depression can affect your work, your studies, how well you sleep, and even your appetite. Persistent feelings of sadness, emptiness, and anxiety are all signs of depression that you should talk to your doctor about. Certainly if you are having suicidal thoughts you should tell your doctor. Depression is treatable. Medications and/or talk therapy are often helpful. The preceding information relating to symptoms of sarcoidosis is excerpted from the FSR publication 'Sarcoidosis and the Body', © 2007. Click Here to order your free copy.

http://www.stopsarcoidosis.org/sarcoidosis/symptoms.htm



***I increased the size of the Paragraph pertaining to the Bones, Joints & Muscles because THAT is where MY Sarky has been dwelling at for the past 3 Months.




Naimah

The FSR (foundation for Sarcoidosis Research).

This is a Very Good Site to learn more about Sarcoidosis.
And this is what they have to say:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

SARCOIDOSIS

Sarcoidosis (pronounced SAR-COY-DOE-SIS) is a potentially fatal inflammatory disease that can appear in almost any organ in the body. Although the lungs are affected in more than 90% of patients, the disease often attacks the heart, eyes, central nervous system, liver and kidneys. Once thought rare, sarcoidosis is now known to be common and affects people worldwide. The cause remains unknown and THERE IS NO CURE.


About FSR

The Foundation for Sarcoidosis Research (FSR) is the nation’s leading nonprofit organization dedicated to improving care for sarcoidosis patients and to finding a cure for this disease.


Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And that is just some of the Stuff that they have for you to read on Sarcoidosis.
They have much, much more information, links, news & events....etc.
So stop by and check it out....you may just be surprised!!!

http://www.stopsarcoidosis.org/




Naimah

Have you heard of Sarcoid Buddies....??



It is an Online Support Group that I've been a Member on for some yrs. now.

I liked going on it, but fell off due to some personal things I was into.
It is a Very Active Group....and I pray that some Day MY Support Group will be As Active as it is.


It is Run by a Very Nice Lady named Kipy.....and she has done a Wonderful Job with It.
So..Stop by and check IT out as well.

http://sarcoidbuddies.blastgroups.com/




Naimah

I've Started a Sarcoidosis Support Group on Facebook...!!!


I wasn't a regular on Facebook....and the only reason why I was even on it yesterday, is because my brother sent me an invite to join his page, lol.

Once there....I decided to search around to see if there were any Support Groups about Sarky....and there wasn't....NOT ONE!!!
So I decided to start one up Myself.....there ya go, now that's progress....lolol.


It is Very New, so not much is on it....and I only have ONE friend so far that's join it....but I am putting out the Word about it and GOD Willing, a lot of people will hear about it and Join as well.

If you'd like....you can Join it too.....aaawww, come on....It's Free!!!

http://www.facebook.com/group.php?gid=55340664645&ref=mf




Naimah

So Far....So Good Today!!!



All Day yesterday, the Eve. and Last Night....I wasn't feeling too good, and Sarky kept coming back to back.
I took some time off from writing in My Blog & My "NEW" Support Group I started Yesterday....I really needed to Rest, before it got any worse.

I am feeling a little better right now (just the normal aches & pains)....and it is only 12pm, so we will see how the Day goes by.


I am All Alone Today....No Grand babies and Jeev (my 20 yr. old Special Needs son) finally went back to School Today....so I won't see him till 3pm.....so I am just going to Chill for a bit, relax and watch a little TV and post on My "NEW" Support Group....and that's it.

Have a Blessed Day.....




Naimah

I Cry.....Alot.


Nowadays....there isn't a Day that goes by that a Tear is not welling up in my eyes....and for various reasons too.


I Cry about the Pain that runs throughout My body EVERYDAY.

I Cry about Not being able to do the things I used to do....because of Sarky.

I Cry because I am not able to Play with My Grand babies the way I want to....you know, get down to their level and JUST PLAY!!!


But Most of All.....I CRY, BECAUSE I SHOULDN'T BE CRYING....because I should be Grateful that it is not Worse than it is (and I really Am).


I Cry about THAT.....ALOT.





Naimah

Remission......"Where Are You"!!!!!



I can remember, between the years of 1992 - 2004...I used to be in-and-out of Remission with this Disease.....What ever happened to that!!

It has been 3 yrs.....going on 4 yrs., that I've been in Constant Pain with Sarky...and I long for the Days of Remission.

I would go about my Day, Pain Free for the Most Part...maybe an ache here Or there....but Nothing compared to what is going on these Days....geesh!!
It is like the Word doesn't exist any More for Me.....Whyyyyy.

Some days, I will sit back and think of those days...when I could get dressed without Pain, Walk down the stairs without holding on the Rail AND without doing the "two-step" Or "Baby Walk"....and lets not forget, being able to get up and go...without having my Pill Pack attached to my Hip (really inside of my Purse...but you know what I mean).
Those Days have been soo far away from Me....that I can vaguely remember them.


So I Ask....."Where Are You, Oh Remission"....and do you have plans on revisiting Me any time soon???!!!!!




Naimah

Tuesday, March 10, 2009

Continue.....

Alright, the meds. are in me...but things are still not the same.
I am really not myself Today for sure......

I will just wait it out till the meds. begin to work....in the meantime, I am going to lay back and rest my body (not that I've been doing things to have the Need to rest....)....I think it will be best if I chill for a while, there is something going on for sure....and I don't have a clue of why.
You know, This usually happens every now & again....but not an All Day Thang.

It is weird.

Okay, I will be back on later on tonight Or some time tomm. if I am not feeling better, so....until then.....be Safe & be Well!!!!




Naimah

Today is NOT a "GD".....I just can't understand it some times!!!



I don't know why....but Today, My symptoms are coming back to back....and quickly too.

I got up pretty late Today, because I didn't have any of the Grands this morn.....so I too advantage of it and slept in.
And what woke me up was, my sister came by to visit.....she came upstairs and woke me up and told me that it was around 11ish....I was like 'WHATTTT".

So anyway, while she sat at my computer, I told her to tell my son to send up a banana and something to drink so I could take my meds.....I was a couple hours off from taking them at this point.

I waited a few before finally getting out of the bed....and at first I thought everything was fine, but then after being downstairs for a bit....the symptoms started to come back again.
Now I am getting a little worried...because I JUST took the meds. about an hour prior, so why the symptoms.
I just don't understand it some times......

I held off as long as I could.....and it started to get towards 1:30pm I think....when I HAD TO take the next dose.
Now normally, I would wait till 4 hours went by Or that it was coming up on 4 hours....but it was like only 3 hours had gone by and the symptoms were starting to RAGE.
I just can't understand it some times......

Okay....it is now a few mins. to 6pm and My whole body feels like it is on Fire.
It started, as it ALWAYS does....in my Mouth, I can feel the Fever welling up in it....then it slowly works it's way down the rest of my body....until I can't stand it no more, and to be honest....I shouldn't have waited THIS LONG....because it is just going to take longer for it to work, because I waited soo long.....but I had to, it was wayyyy too close to the last dose!!!

And it is not like those Days where I am doing something and I lose track of time....I wasn't doing anything to lose track of time....the symptoms are just creeping up on me sooner than normal.
I just can't understand it some times......


I am going to have to pause here for a moment, because it is really intense, the pain is throughout my entire body....the Fever alone is making me weak, and Every Joint & Muscle is throbbing....I honestly feel like Crap.

And THIS Ladies & Gentlemen....is what MY BODY goes through on a Daily Basis, except...I take the Meds. to "Mask" the symptoms for a while....so I am not feeling it, BUT I KNOW IT IS THERE!!!
I just don't understand it some times.....


PAUSE......

Saturday, March 7, 2009

Did I mention about the BURN in my foot!!!???



I keep getting this BURNING feeling in my Left Foot, and it has been going on for yrs. on & off.
I know that it means that Sarky has "made itself comfortable" in that area....and it must really like that spot, because as I said.....it keeps coming back.

It feels as if someone is lighting a match on my foot for a hot sec. and then I am feeling the 'aftermath' from it.
It also feels like there are tiny little spots being pricked at with a Very Fine needle.

And the funny thing is, it is not in an area that touches the floor/ground....it is around the arch of my foot and because I am not Flat Footed, it doesn't touch a flat surface at all.


By time I reach my doctors....I guarantee, the feeling will be gone.....it always happens that way (rolling of the eyes)....Or if it is still there, and the doctor orders me to have it "checked out"....by time I get the procedure done, the symptoms would have left me again.......OH I HATE WHEN THAT HAPPENS!!!






Naimah

Knees



Another thing to put in my "journal" is Knee Problems.

I have had this ongoing problem with my left knee, since I don't know when.....in comes and goes, and back in 2003.....it actually lasted about 9 Months of that year, I kid you not.

What goes on with it is this; I have pain, not the normal pain though....very painful pain....the kind of pain that the Pain Meds. don't take it away.
And it gives out on me a lot....at any given moment too.
I could be holding one of the Grands and Wham....there it goes.
I try not to have carry them too much, and the fact that they can walk now....helps a lot.

If I turn my leg too far to the left.....I will be in soo much pain and I will lose my balance also.
If I lift it too far up (which is not far at all)....It will let me know that I've gone to far.
If I stand up straight and accidentally push them back too far....oh boy, that will be it for me!!!

As I said, this has been an on going thing with me....and I had in the past, an MRI on that leg/knee and the only thing that it showed was that there is a lot of Arthritis going on in there....WELL I COULD HAVE TO THEM THAT.
It scares me some times because I don't know when it will give out on me and the next thing I know I am on the Floor, Or worse......the Ground.

I noticed that it is much bigger than the Right one also.

Oh Well....let me get to writing, so I don't forget what CHANGES I've gone through and I can report them to the doctor next Month.





Naimah

Friday, March 6, 2009

Right hand....Ring finger!!!



For the past few days, this finger had been in soo much pain....I can barely bend it.

I know that is it part of the Arthritis and all, and there is basically nothing I can do about it.
It is soo swelled up that it feels like I sprained it Or something.....Ouchhh!!!!

As I touch the knuckle, I can feel the swelling...funny thing is, that is the only finger that feels like that...I mean, the others hurt as well (the normal aches & pains that happen EVERYDAY)....but this pain is different....the whole finger looks swelled up.

I guess I need to mark this one down in the ole' "Journal" so that I can have it documented at the doctors next Month.


Oh well......"in the Life of a Sarky Sufferer".
You never know what to expect......





Naimah

Wednesday, March 4, 2009

What would We do without.....Medical Insurance!!!




I am soooo Grateful to ALLAH/GOD (swt) for Blessing My husband with a JOB for One....and GOOD Health Insurance for Two.
Oh....and Good Health for My Husband so that he can go to work each day....to be able to Keep this Health Insurance.

I don't know what I would do if I did not have Health Insurance....I would be totally screwed I know THAT for sure.


Thank You Teresa for reminding Me (in an indirect way, lol)...about the Health Insurance.....and being Grateful for it.
I had meant to post something about it for a while now, but kept forgetting to.

Again....Thanks!!!




Naimah

Tuesday, March 3, 2009

I think I may be Retaining Water




I am not sure, but I think I am Retaining Water.
That, Or I am swelling up from Sarky.
Either way, it is not a good thing.

Something else for me to bring up to my doctors.


My legs feel real tight, from my calf....down to my ankles.
Now I almost ALWAYS have swollen Feet & Ankles...but it is rare for my Legs to be as tight as they are.

A way that I can tell if they ARE Retaining Water....is to press my fingers into my Legs.....if when I pull them back and it shows my finger prints, then I am Retaining Water.

Usually if I put my legs up, this will bring down the swelling....but if they don't go down after that, then I will give the doctors a call.


InshaAllah (GOD Willing) it is not anything serious.......







Naimah

In the Wake of an Emergency....what would you do about your Meds.??!!



In the Event of an Emergency, whether it be from a Flood, Hurricane, Earthquake, Tornado, Fire....etc.....What will you do if you are without Your Meds.??!!!!

IT IS A SCARY THOUGHT FOR ME.....How about You??

I always say, in the Event of an Emergency, there are a few things I would like to SAVE if it is at all possible.

One would be MINE & MY SON'S MEDS., another would be My Safe (although it is Fire Proof so I guess I could leave that)....and Most Importantly, anyone who was left in the House....I would want to make sure they were out of the House.

I sat back this morning and thought about what would happen if I didn't have My meds. due to a Disaster of some kind....and not only Me, but my son as well.

He has a history of seizures, so if he was without his meds. his seizures would resurface again...he is also on Behavior Meds. and if he didn't have those to take....let's just say that he would not be the Nicest Person to be around (and it would not be his fault).......GOD Forbid.

And Me.....well, I would end up in the Hospital for sure...and THIS would be the case if it was not a Flood Or anything like that that would prevent me from going to the Hospital.
I would be sooooo sick, I could even see myself being unconscious from not having my meds. for a few days....I would be out of it for sure.
And I don't think my body would be able to fight off the Sarky Attack......I would be soo weak, the only thing that would help IS my meds. Or if I was able to get to a Hospital.....they would have to draw a line for an IV immediately.

I am not joking Or exaggerating either.....


I was watching a program this morning, and they were talking about the Katrina Disaster.
How All those Poor people were left alone to starve, and some even Die.
Some were Wheelchair bound, on Life Support, needed to have Dialysis....and some, like Me....had a condition where Meds. were taken on a daily basis to survive their illness.

WHAT ON EARTH DID THEY DO.......HOW DID THEY SURVIVE WITHOUT THEIR ROUND THE CLOCK MEDS. THAT THEY NEEDED....HOW DID THEY SURVIVE WITHOUT THEIR DIALYSIS......WHAT BECAME OF THOSE ON LIFE SUPPORT!!!!????

These are the questions that came to MY MIND when all of that was happening to those Poor people.
It was a Horrible thing that had to happen to them.....and We could not even imagine what they were going through.....Ya ALLAH!!!

I don't know about anyone else....but because I DO take meds. daily, those kind of questions became a concern of mine.....OHH THOSE POOP PEOPLE!!!


What will happen in the Wake of an Emergency for those who have to live the Lives on Meds......

Those people that were hit by Katrina didn't have a chance, they didn't know that that was going to be the End Result.....so they didn't have Or didn't even think that they would need a Backup Plan.

They tell Us that we should have a "Plan" in place in the event something like that happens to you in your lifetime.....but how do you plan for something like that......is there even a way to plan, especially in the case of a Flood.....if YOU are in the Flood, so are the Pharmacies, Hospitals, Emergency Clinics....the list goes on & on.

There will be soooooooooo many people that will suffer from their illness if they are struck with one of these Disasters......I pray that it NEVER happens to Me Or Mine, and if it does.....Whew, I don't even want to think about it......!!!!!!!!


But in any other case, like My Pharmacy burning down, Or something happens to the Hospital....Or just anything that would deter me from getting my medicine Or my son's medicine....it would be a hard thing to deal with.

Now I am not by any means comparing THAT with the Floods, Earthquakes, Tornados....etc....that some are have & will be afflicted by.......that would be totally unfair of Me.

I am speaking of the Minor things that could happen, and what could I do to retrieve my meds. in that type of situation.

It is something to think about for sure.

I pray that it never happens....but if it did, I pray that I would not have to be without them for too long, and that goes for my son.....AND ANYONE ELSE IN OUR PERDICAMENT.



May ALLAH/GOD (swt) Save Us from those types of Major Dangers....and the Minor Dangers as well, and May HE (the Almighty) have for Us a way to get Our Medicine & Emergency Care in the event that any one of those occurs........AMEEN.

Naimah

Monday, March 2, 2009

Finger Tips....feeling a little funny!!!




I noticed the other day....that my finger tips on my left hand, were feeling a little tingly.
As I am typing this, I am feeling it again.

Yesterday was the second time that I felt it....so I would have to say that it has been 3 times in the past 4 days.

I have no clue of what it is....they tingle, then it feels almost like what you feel after burning your fingers slightly on something.....and then you have a pulsating feeling after that.

It is weird, and I am recording it for my next visit to my doctor next month....or sooner if it gets worse.


Of course I am associating it to Sarky.....almost everything has a Sarky Tag to it now a days.
But we will see......







Naimah

From Sun Rise.....to Sun Set.



Here I will write how a Single Day will be for Me with Sarky.


I wake up around 5ish for my Morning Prayer.....I sit on the edge of the bed trying to comtemplate how I am going to maneuver myself from my bed....to the bathroom across the hall.

I start out by grabbing my Cane (left over from when My mother hurt her leg yrs. ago falling down the stairs)....as I grip the Cane, I am still mulling over in my mind which way to go about this.

By now at least 3 mins. have gone by.

I then make my first move....Cane in hand wiggling away....I grab tight to the Cane with One Hand and the other hand is gripping my Computer Desk (that sits right next to my bed).
As IT wiggles right along with Me, I finally get to a standing position.....and off I go.....SLOWLY towards the bedroom door.....grinding my teeth together, walking on the sides of my feet, and shouting out as low as I could with each step (trying not to wake my son who is sleeping across the hall).

I get to the bathroom door, and slide my way to the toilet (oops, too much info. for ya....)....after I am done in there, the same steps are taken to get BACK to the bedroom.
By time I reach my room, a good 10-15 mins. have passed by.....Wayyyy too long for an ordinary person, but with the amount of pain I am in, there is no Way that I could get it done in a shorter time.

It literally Wipes Me Out too....when I sit down to make my prayer, my legs are going from side to side because I am trying to shake the pain away....I can barely concentrate on my prayers.

When the prayers are done.....off to bed I go, till my alarm rings for me to get up and get my son off to school.
He is still in High School (this is his last yr.), and 7 times out of 10, he will give me a hard time to get him ready.
And I don't need that with All the pain I am in.
He sometimes tells me....."Ma, if you are in THAT MUCH Pain, then maybe I should stay home"....Yeah, I ain't in THAT MUCH Pain...Your still going to school....Pain Or Not, You are outta here.......

If I have my granddaughter over, she is usually up by now (he gets on the bus at 7:45am)....so I get her bottle ready, and I grab a banana so I can take my pills for the morn.

If I have TOO MUCH movement in the morn.....the pain comes on FAST, but let's say it is the weekend, and my son doesn't have school...than I am not rushing around alot and my movements are a lot slower, so I can hold off till about 8am to take my pills.

After that, I will sit and watch some television...basically to keep myself STILL so the meds. can kick in.

Now it is time for a little house work....and I mean little, lol.
Between 10 & 11am, my granddaughter is whining for a Nap....so I get her ready for that and then I make my mid afternoon prayer.

Then I clean up what lil Miss Tornado managed to destroy in her morn. playtime.....and I wait for my next dose of Meds. to come around (between 11am - 12pm).
She usually sleeps a good 2-3 hours in the morn.....Yayyy, lol.

Around 1:15 the Grandson comes through the door, and the Granddaughter is wide awake (I would have had my 2nd prayer in while she slept)....ready to play, and My first Afternoon Dose is already in me....and it needs to be, because THOSE TWO are like 5 kids between the two of them......if I didn't have my meds. in me while I have them....you can forget it!!!!

They usually go non-stop for the next few hours.....making me tired just looking at them, and then they are ready for a Nap, between 3 and 4pm (I get my late afternoon prayer in now).
By now I can feel my hands hurting, my knees tingling, and my feet swelling up....and I waste No Time getting my meds. in me after those warning signs.

My Grandson leaves an hour Or so after that, and dinner is made (if I didn't already have it done)...my son's plate is fixed, I'll have him in the shower for the next day and HIS Meds. are taken.
My daughter would have come home between 12 & 1pm, so my Granddaughters needs are being taken care of by her.

I usually head up stairs to my room (& my computer) for the ending of my day (and it's time for the eve. prayer).
While trying to get some work done on it....those oh soo familiar feelings of pain would once again Creep Back Up Again, letting me know that "IT'S TIME"!!!!!!!
So I pull myself away to grab my meds. on my nightstand and resume to what I was working on.

I MIGHT catch a little TV on one of my breaks (I HAVE TO step away from the computer from time to time, because if I don't....Meds. Or no Meds., the body will let me know about it).....and then I will head back up to do some more work (I am a Moderator for a Sisters Group online).

My nights are usually long, because I try to stay up and wait for my husband to come home from work (around 1am-ish).....and some times, I am still on when he walks through the door....but I realized, the more I am on it doing my work....the more meds. I have to take.
I must be working my hands too much.

Then it is off to bed.
If my Granddaughter spends the night, I stay downstairs with her because she sleeps too wild for my and my husband, so there is a Futon Mattress that we keep in one of the storage rooms and her & I will sleep on that in the living room.
I have a good nights sleep when she is here, but the mornings are like I had the worse nights sleep....and that is because I am basically on the floor and have to get up from that position in the morn......NOT GOOD I TELL YA!!!

I deff. use my Cane those days....there is no way I can get up from that floor without it....and it takes twice as long to get up on those mornings.


Well, that's it....in a nutshell.
Doesn't sound like much....but if you had to live it for ONE DAY in place of Me, I promise You....you would be like...."dangggggg, I didn't' know it was that bad".








Naimah

Evening could have gone better......




Today started out right.....but towards the end, in the eve......it all went down hill for me.

I took my meds too late again, because I was trying to focus on getting my granddaughter together to go back home.....and in the middle of all that, I missed my dose.

So as I am writing this, I am about a half hour late on my meds.....and I am feeling it big time too.....YIKES!!

I noticed it when I pulled up to their place, and I felt alittle irradiated....and my hands were not gripping the steering wheel right....also, my feet kept slipping off the brake......I think it was my nervous systems that was being affected at the time, my foot just kept jumping and every time I tried to hold it still, it would slip off the brake......SCARYYYYY.

I left her bottle at my house, so that meant I had to drive back to get it and bring it to her (she had none with her)....so back I went.....scared the whole time, I tried to keep my mind focused because I didn't want to get into an accident.
I finally got the bottle back to her, and on my way driving home....it was getting worse, I REALLY needed my med. now.....as I pulled up to my house, I almost jumped out of my car to get inside (all while limping along because my body was in sooo much pain).
I scarfed down a piece of corn bread (it was the first thing that I could grab), and poured a glass of Grape Juice and sat in my Fav. chair in the living room and ROCKED.....I rocked, and rocked and rocked....till I could feel the meds. working it's way through my body.
It was 100% through....but just knowing it was on it's way meant a whole lot to me.


All of that brings me back to a time two Summer's ago, when I had soo much pain in my hands while driving....that I actually had to use the sides of my hands to drive, I thought for sure I was going to crash.
It hit me out of no where.....and at the time, I wasn't on any pain meds.....just the OTC Flu Meds.
I was driving home....and all of a sudden I felt this pain slowly creeping up my hands towards my fingers....I would take one hand off the Wheel and shake it around a bit, thinking that that would solve the problem.....but it didn't.....and I continued to drive, and after going back & forth with the shaking of my hands, I realized....the only way I was going to be able to drive, was to use the sides of my hands....I was like, "this is ridiculous"....I need something to take this pain away (I was thinking THEN about seeing a doctor because things were getting out of hand.....no pun intended).

Well, I guess I must be feeling a little better since I am able to make "jokes"........

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