Friday, May 29, 2009

I had my Ph. Confrence today for SSI/SSDI

I guess it went well.....

She asked a few questions about my health....and I told her.....and she asked about my doctors.....and I told her.....then she told me to send out the "Request Form for the Doctors" as soon as possible......and I did, today.

She also mentioned, after I asked her about, that it would take like 3 months before I would hear Anything from them concerning my case.
And I then proceeded to ask Her if it was true that "one always gets rejected the first time applying".....she laughed and said, "No....there is absolutely No truth to that, but people ALWAYS say it is so"......and I laughed with her.
I pray that she is right......

Anyway.....I guess I just have to wait it out like everyone else does......finger biting & all!!!!

In the meantime, I am looking forward to my First Visit with the New Rheumy next week.....and pray that All Goes Well with that.

Tuesday, May 26, 2009

My Left Hip......

Yesterday was pretty good, but today is another story......probably because of the good day yesterday.
It is not like I over-did it.....but hey, maybe I did......I was doing a lot of back-and-forth from the house to outdoors......slowly though.

Well today, my left hip is hurting like nobody's business......!!!!!!!!!!!
Oh and the feels like it is burning a hole right in my hip.
And it didn't help that my Grands wanted me to keep getting up & down to get them things today.....boy I can't wait till they can do it themselves.

I can't even sit still for too long....I have to keep switching positions.....OUCHHHHHH!!!!!

I am going to lay down now and rest my hip....and pray that THAT helps.


Saturday, May 23, 2009

Out of Breath alot.....and oh soo weak.

It only takes me being on my feet for just a little while before I need to sit down/lay down and catch my breath.

I am soooooooo weak that after being out for a couple hours yesterday.....when I got into the house, I almost pasted out.
And it wasn't because of the heat.....although, THAT didn't help it any.

My body feels like it is wearing down on me.....right before my eyes.
It brings me back to when I first starting getting signs of Sarky......back in 1991.

I was soo out of it back then, and the same feelings have come back......and all because NO ONE can seem to figure out WHAT MEDS. will "take the sting off" in order for me to FUNCTION on a Daily Basis.

I don't know how much longer I can stand this.....too weak to do a darn thing.....not even wash my behind at times!!!!!!!


Thursday, May 21, 2009

An Excerpt from an Article a "reader" sent me....very informative indeed.

Treatment and Practical Solutions (for Osteoarthritis)

To find out the nature and extent of muskuloskeletal (muscle and bone) pain in Malaysia, consultant rheumatologist Dr Kiran Veerapan, along with Richard Wigley and Hans Valkenburg embarked on a COPCORD (Community Oriented Programme for the Control of Rheumatic Diseases) survey in year 1988.

The survey results, published in the Journal of Rheumatology in the year 2007, showed that 58.8% of those who have rheumatic pain in the study self-medicate with over-the-counter analgesics or other medications that they acquired without prescription.

But is self-medication advisable? Although mild analgesics like paracetamol is allowed to relieve pain, if a person has persistent joint pain, especially with signs such as joint swelling, significant morning joint stiffness (more than 30 -60 minutes from awake in morning), loss of joint function (regardless of one or more joints affected), this person must seek medical advice as all those signs and symptoms imply more serious arthritis.

Early treatment of a serious arthritis can prevent structural damage of the affected joint.If you are diagnosed with OA, make sure you are well informed about the natural course of osteoarthritis. You can learn about ways to manage your condition and have realistic expectations of the treatments your doctors can offer.

For mild OA pain that is bothersome, but not enough to affect your daily activities, your doctor may prescribe rest, exercise, losing weight, using heat and cold to manage the pain, physiotherapy, over-the-counter pain creams and braces or shoe inserts.

While applying heat is often the common method used for pain relief in our community, cold packs can also do the trick. However, if you have poor circulation or numbness, do not use cold treatments. Heat treatment should also be warm, not hot.

If the pain persists despite initial treatment, you may require medications for pain-control or to slow down cartilage degradation. Medicines are used to provide a pain-free, more mobile, efficient and effective lifestyle. analgesics (painkillers) and anti-inflammatory agents should be used with caution as they have possible side-effects.

While there are no proven disease modifying agents for OA, glucosamine, chondroitin sulfate, diacerin and esterified fatty acids may ease pain in some individuals and slow down cartilage degradation in some early cases if they combine the use of medication with non-drug measures.

Intra-articular steroid injections (injecting small amounts of steroid to the affected joint) can also be used to treat the inflammatory flare-ups associated with knee OA, but it must be done by a trained doctor in accordance to certain guidelines.

However, studies show that the injections are effective only for the short term.

Early treatment in the form of knee strengthening through exercises is useful. Drug therapy does not halt OA, but since exacerbation prevent people from exercising, pain relief is important.

Surgery may be an option for severe OA that is not relieved by other treatments. Joint replacement and debridement (removing loose pieces of cartilage and bone from around your joint) are among the surgical options available.

Although medical advances have provided physicians means to help you relieve or lessen the pain caused by OA, a major component of OA treatment lies in your attitude towards the condition.

A positive attitude will go a long way to help you cope with OA. More importantly, it determines how much impact OA will have on your everyday life, despite the pain and disability.

Alright, the "Pred." isn't working like I'd thought.....soo,

Something told me to get some over-the-counter Flu Medicine like "I USED" to use before getting on Any Pain Meds.
So I sent my son to the Drug store for NyQuil Daytime...........Drum Roll Plz.......AND IT WORKED!!!

Well, somewhat anyway.......

I mean.....I am not as "uncomfortable" as I have been these past few days and even though it is only doing the job for a short amount of time....In that time, I am able to get SOME things cooking real quick, taking a shower.....ahhh yes, A Shower without being all hunch over and feeling faint.......also, I can tend to the Grands like I need to.......AGAIN, only for short periods of time though........BUT IT IS BETTER THAN NOT AT ALL!!!!

The "Pred." is only "capping" it off.....the discomfort......and the NyQuil is doing the rest (for a bit).......but I still have all this stuff going on in the meantime, like the Knee & Hip Pain from the Osteoarthritis......WOW, is that hurting me these days......Yikes.
And nothing seems to take THAT away......

Then I have the Fibromyalgia Pain.......the stiffness is really getting to me.
THOSE THINGS I will have to deal with until I can get to see the new doctor in a couple of weeks.....but the Fever, Aches, Weakness and such......Now THEY, I can't handle.......AT ALL!!!!

I WILL NOT be able to go throughout my daily activities with THOSE symptoms taking is just not possible.

SOMETHING HAS TO GIVE.......Someone HAS to know what will stop these symptoms......besides the Pain Killers I WAS taking.
Because Lord Knows......I DON'T WANT TO BE CALLED AN "ADDICT" AGAIN......!!!!!


Tuesday, May 19, 2009

Okay....Day 2 of the "Pred."

Still no comfort.....but I am being very Patient.

I figure it will take at least a week (Or less I hope), for me to see Any Kind of relief.

I'm trying......I'm trying......Really I am.

Monday, May 18, 2009


I have been REALLY, REALLY DEPRESSED lately....because I was not sure how I was going to go about 'How to maintain my Pain & Discomfort' since my New Pain Med. script was lowered.
So after crying my eyes out one night, it came to me (from GOD) that I should get back on the Pred.

As I stated in one of my last Posts here, I was going to ask my PCP for a Script for Pred.....well, today was my appt. with him....and he gave me the Script!!!!!!!

He has me on 10 mg., twice a day for however long......Fine with Me.....For Now.
I am soooooo Grateful let me tell ya.....because I was at my wits end not knowing what was going to happen in the next few weeks.

I still have the appt. with the New Rheumatologist on the 2nd of June, and I will be bringing up a slew of concerns.....starting out with, the symptoms everyone seems to be avoiding......FEVER, ACHES, WEAKNESS, all around Flu Like symptoms.....etc.
I DO NOT want to focus on Any Pain that I may be having......just the other symptoms, the ones I CALL "Sarky Symptoms".

All the other symptoms of Pain are from either the Fibromyalgia Or the Osteoarthritis....and although my Old Doctor.....Yeah, I can say that Now (thank goodness)......seems to think that the Sarky is "at bay", I KNOW MY BODY BETTER THAN ANYONE....and I SAY, it is Still present.
So let's work on THAT.


All those Prayers I'd made in the Past Week Or so really payed off.....and for THAT, I am Grateful to GOD......for hearing me out!!!!!
So a note to Everyone who is reading This....."do not dispear, just PRAY....and be Patient.....HE Does hear you, and HE Will answer your Prayers".......IN DUE TIME!!!!!


Friday, May 15, 2009

I think I may need to return to using "The Pred."....just for a bit.

Since my Rheumotoligist is insisting on NOT increasing my Pain Meds....I think I may have to get on The Pred. (Prednisone) after all.
I really, and truly didn't want to go that route....but because I am running out of Pain Meds. quicker is imperative that I get SOME KIND of relief.....and I think it will have to be through the Pred.

My "Rheum." doctor is on Vac. for two I am going to try and get my PCP to write a prescription for it, and I am PRAYING that he Will.
Usually, he will leave things that deal with the Rheum. doctor.....but considering He's on Vac., I pray that he will understand........GOD Willing!!!!

I have a doctor's appt. with my PCP on I guess I will swing back through here THEN.


Tuesday, May 12, 2009


Not a Good Day today, At All......

I almost wasn't even going to come on tonight.....after My doctor "lowering" my dosage on the Pain Med., I have had soooo many Bad even kept me from going up to my nieces house today and "chill" with Family & Friends......(some family members are up from NYC & Florida).

I felt BAD about it.....but I just could NOT get it together enough to even TRY.
My body was riddled with Pain & Discomfort (Fever, Aches, Weakness.....THE NORM).

And of course......I began to have "pitty" on myself.
Boy, when am I gonna learn.....This MAY BE how it is going to be from Now On......"Ain't ya got it Yet".

Oh.....and it doesn't help that I am "going through the CHANGE".......Just Great!!!!!
All that Pain & Discomfort.....and My HORMONES "running a muck" on top of it All.


Wednesday, May 6, 2009

It's Not ONLY Pain I am going's other things also.

A lot of focus is on the amount of Pain I have.....but technically, I don't Only have Pain....I have FEVERS, WEAKNESS, All around feeling of ILL HEALTH.

But MY Doctor doesn't hear That Part of Our conversations....even though I let him know each time.

HIS Focus is on my Joint & Muscle Pain, but there is much more going on than That.
This is why I say that Sarky is Alive and Well inside of me...even though My ACE Levels say otherwise....actually, My ACE Levels are at 60 and the Range Starts at 69 I I am ONLY that much away from it SHOWING that I am in Active Sarcoidosis.
Even "I" know that.....

When my symptoms Flare up, it usually starts out with a Fever, then comes the Aches & Pains....and Stiffness, Weakness, Tiredness...."just a want to lay down" feeling.
Like you got the Flu....but every day.

That is why I wanted to know exactly what MY Doctor was treating me it the Joint & Muscle Pain, because THAT is what you Specialize in....Or are you treating the Whole Disease(s)....because there are Multiply symptoms that goes along with Sarky.....some of what I've mentioned above.

And there are Multiply symptoms that go along with Fibromyalgia & Osteoarthritis also.....and All 3 can have Similar Symptoms to eachother.

I just need for People in general, to know that it isn't just the Pain that needs to be focused on.....All of the other symptoms have their share of "making me feel ill" as well.
And sometimes, even more than the Pain.

Well I Did It.....I started the whole SSI/SSDI Chapter!!!!

Last came to me, "I think it is time you started That Chapter in your Life" I did.

They say it will take a long time to fill it out online (a few hours Or so)....and it did.
My Goodness....!!!!

I didn't think I'd ever get done....but thankfully I did.

I also called the #800 number to find out some info. I wasn't sure of...and the lady on the ph. told me that "I" would have to fill out for Both SSI....AND SSDI.

She set me up with a ph. conversation with an Agent next Week and we will go from there.
GOD Willing....everything will go smoothly!!!!

Even if I am denied the First Time (like everyone says they do) least I got it out of the Way.

Monday, May 4, 2009

Still with the Chest Discomfort

Every since I was diagnosed with the Fibromyalgia.....I have noticed that I have a lot of discomfort in my chest & neck area.
The spots where the pain is....well, it's like I have on a hanging necklace, not too long....and not too short....just enough to reach down towards the "girls", Or maybe just before it reaches them.

It hurts to inhale & exhale....and it almost feels like I pulled a muscle there, and I know very well I hadn't.
The pain is in the same area, towards the back also....soooo uncomfortable.

I literally have to hold my chest when I inhale (and exhale) I have a really bad chest cold, but the only thing is.....I HAVE NO COLD!!!

This is Fibromyalgia for ya.....

Btw, I called to make an appt. with my friends doctor today.....and he is soooo booked up, that they had to give me one for next Month.....JUNE 3rd.
I am soo desperate that I took it anyway......better at That Time, than No Time.

In the meantime, I WILL go and make that appt. with the Orthopedic Surgeon.....just to see what he has to say.
And if he is talking Surgery as well.....I will postpone it until I speak with the NEW Doctor (GOD Willing).

Sunday, May 3, 2009

I had a Rough Day yesterday.....AND Today!!

Yesteday.....because MY DOCTOR decreased my Pain Meds., left me in extreme pain & discomfort.

I guess he THINKS that I will be one of the "FALLEN", and become addicted to the Vicodine.
I....DO NOT, I REPEAT....I DO NOT....become addicted to Meds. Or any other type of Drug.
I have NEVER been the type of person to be drawn to ANY TYPE OF is NOT MY nature.....and I thank GOD 1000 times over for that.

In a way....I can understand why he would react in that manner....there are sooooo many others out there who ARE, and who CAN be in That Place.....but again, it is not me THANKFULLY!!!
But at the same time.....My Blood Work clearly showed that I was not one to ABUSE My meds.
I am pretty sure, IF I was the type to ABUSE my would show up Some How in my Blood Work.....RIGHT.
But nothing.....because it is not the case with me.....I am not a druggie, and nor was I ever in my Life.....It is just not my cup of tea.

Anyway, getting back to the Topic at hand.

My hands have really been taking it the past couple of days.....and I truly have not done anything to provoke it.....Nothing.

My chest is really sore today.....that is part of the Fibromyalgia.
And so are My other SORE SPOTS linked to the Fibromyalgia.....the knees, elbows, etc.

My mother seems to think it may be due to the weather.....and I agree with her that it, the weather....has a play in the pain & discomfort I am feeling......the weather is very rainy & cloudy today.....and it plans to be That Way for the coming Week.

Tomm. some time, I plan to call my friends see if I can get in to see them the meantime, I will just try and GET THROUGH IT.

Thanks Again.....AND ALWAYS.....for stopping by and reading My Blog!!!!

Need to change my TITLE of This Blog....!!!

Well, since I've been officially diagnosed with Not only Sarcoidosis....but with Fibromyalgia & Osteoarthritis....I think it would be fitting to change my Title of my Blog to possibly......"Living Day to Day with Sarcoidosis....AND Fibromyalgia.....AND Osteoarthritis!!!!

Who in the world would have ever known that as you grow OLDER, you would be Living with Multiple Diseases/Conditions.....I know it never crossed MY MIND.

So, in the next few days....I will be trying to come up with a New Title for my Blog.....Anyone have Any Ideas....I will be glad to hear them, lol.

Talk to ya soon.....(GOD Willing).

Friday, May 1, 2009

Missing Parts to My Post.....hhhmmmm!!!

For some reason.....part of my Last Post was not showing.
Here is what was missing......

VITAL SIGNS: Blood Pressure of 115/80.

GENERAL APPEARENCE: The patient a well developed, well nourished obese black female in no apparent distress.

I have NO IDEA of WHY this is kinda Freaky if you ask me!!!

Anway, I hope that it showed up THIS TIME......just fit in the pieces and you should be good to go with the what the Report says.

This is what MY Reports Say.

I asked my doctor for a copy of My Reports and he had a copy made for me (and my PCP).

Under "IMPRESSION", it says this:

1. Undifferentiated Connective Tissue Disease, Rule Out Systemic Lupus Erythematosus That May Be Co-Existing With The Sarcoidosis.

2. Sarcodosis

3. Fibromyalgia Syndrome.

It didn't state the Osteoarthritis....but as I said in the other Post, That was also Confirmed.

It also says, under Physical Examination:

JOINTS: Some crepitus on the knees with stress stenderness. The patient had some classical tender points on current examination.
SKIN: Remarkable for some hyperpigmented lesions on the facial area.......(he told me it was from Sarcoidosis).
VITAL SIGNS: Blood pressure of 115/80......(which is a lie, I saw it when the nurse took it....and the top number was higher than That).
GENERAL APPEARANCE: The patient is a well developed, well nourished obese black female in no apparent distress.......(LIE LIE LIE....that was the day that I came up in there without my Pain Meds.....and I was in extreme amount of Pain.....What, was he blind to got to be kidding me).

I didn't add EVERYTHING that was put under the Physical Examination.....just the parts that had some "significance" to my illness.

****The parts that are in RED is what "I" added to it on was not in the Report.

The Xrays showed that I have DEGENERATIVE DISEASE OF THE LEFT & RIGHT HIP......also, DEGENERATIVE DISEASE OF THE LEFT & RIGHT KNEE......and neither is from any Fractures Or Dislocations of that area.
THIS, is where he gets the Osteoarthritis diagnoses from.

What concerned me with the Blood Work was this: (but my doctor didn't seem too concerned though).

Under the Rhematoid Arthritis Factor; My Results was a 39.....with the Range being 9-36.....3 points over the Reference Interval.....and it stated that it was HIGH (in BOLD highlights).
Also.....under My Comp. Metabolic Panel (14)....My Creatinine, Serum was HIGH....1.06....and the Range being....0.57-1.00.....6 points OVER the Norm.

My Glom Filt Rate, Est was: 56 is Normally 59.

Now, tell me.....wouldn't these Counts concern You.....even if I don't' know what the heck they mean.....just the fact that they are HIGHER & LOWER than the NORMAL Ranges scares Me......!!!!!

Now a Good Doctor....would have sat me down and discussed this with me....Right.....Not MY Doctor.....he didn't say a word other than....."uummm yeah, your counts look real good to me".
Even if it ISN'T anything.....well then TELL ME THAT TOO.....but discuss it with Me and tell Me what the heck it is.....I don't think I am asking for too You??!!!

I plan on looking Online and seeing what I could come up with to Why these are the way they are.....and what can be done to make them Right.

Everything else was Fine.....and even "I" could see That.

Am I being toooooo paranoid....???

Well Today's Visit confirmed 3 things......

My doctor confirmed the Fibromyalgia & Osteoarthrits.....which it what he said over the ph. last why did I have to come in for you to tell me that All Over Again......what, for my $20. CoPay!!!

Anyway, he said that he is putting me on a couple new meds and if They don't work.....THAN SURGERY IS NEEDED INSTEAD!!!!

I was like....."whaattttt, are you sure".

I have to call and make an Appt. with an Ortho. Surgeon. (I still have to make the call for that).
Not sure what He will decide....but I will weigh my options first.

I can't remember the name of the New Med he put me on for the Osteoarthritis, it is still at the drug store....but as soon as it is filled, I will post the name.
He also Lessened my Vicodine, he is big time afraid that I will get "addicted" to it....honestly, that may happen to Some People....but if it was going to happen to me, I think it would have done so by now....don't ya think.
Anyway, he also prescibed another Pain take along with Or in place of the Vicodine, so we will see how That Works.....GOD Willing, it will work out just fine, because I don't have ANY problem stopping the Vicodine....because I DON'T feel that I am Addicted to it....AT ALL. (and I am Grateful to GOD for that).

Right about Now, I will do just about anything to take this pain away....It is REALLY limiting my ability to do Anything......even hold my Grandbabies.

In the past week Or so, I have been having a lot of Hand Pain....and noticed that things are Falling right out of my Hands at times.....and That worries me.
THAT, along with my Knees and Feet GIVING WAY on me.....I am soo afraid to do Anything with the Grands for fear I might drop them.
At times they just want to be Held....and what if I am not able to do That would be a Very Sad Day if That happens.

Oops, I never got around to telling you the 3 things did I, hhhmmmm.....Or maybe I did....lolol.

Okay, let's see......One of the Things is....(which I've already mentioned)....the Confirmation of the Osteoarthritis & the Fibromyalgia.

The second is the Appt. I need to make with the Ortho. Surgeon (which I've already mentioned as well).

And the Third would be......."I am thinking about switching dortors Soon".
Yup, he's about to get Fired....his bedside manners are starting to deminish......

He seems to not take me serious.....even though the Proof is right before him.
He just hands me the scripts.....and tells me "this should take care of everything" (Or something to that effect).....and I am like..."whatttt, are you serious....aren't you going to tell me WHAT the heck I am taking & WHY".......that's it, I gave you too many times to get it Right......Now, YOUR DONE!!!

He would ask me a question about how & what I am feeling....and at the same time, He is Not Listening to me.....I could have to him that I had a Green Head coming out of the side of my neck....and he probably wouldn't even realise it!!!!!......I wanted to say to him......ARE YOU EVEN LISTENING TO ME DOCTOR!!????

THAT is not the kind of doctor I want caring for me......

I wonder had My Husband gone with me....would he have showned me more attention......hhhmmmm.
My husband decided to stay home with Our Granddaughter instead of dragging her out of the I went it alone.

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