Living day-to-day with Sarcoidosis, Fibromyalgia......AND Osteoarthritis!!!

LONG TIME....NO HEAR, RIGHT, LOL.

2011-11-14T02:07:00.003-05:00

Hi Folks, it's Me....Naimah, I know...I know, it has been like 2 yrs., I can't BELIEVE it's been That Long since I've posted here.
I've been on a VERY Long Journey, a combination of Personal, Health and some other stuff, lol (recreational).....but I'm BACK, not sure for How Long though.

Since my Last Post, I've been OFF sooo many meds. THANK GOD...smh, there were wayyyy too many that I was on, and I am sooo glad I am only down to 1 Or 2 Now.
STILL SICK....nothings changed there, but I DID figure out (on my OWN too) that Not ALL Meds. work well together (taking them at the same time of the day that is), so...the MAIN MED. (the One that is Strongly Needed to get through the day), the Gabapentin...can not be JOINED with Any Other Med. Or Vitamin I may be taking throughout the day......so what I do NOW Is, I take THAT MED Alone and about half hour to an Hour Later, I'll take any other med. that's needed to take (like Blood Pressure Med. Or Vit.)...it took me a LONG TIME to figure it out, but I got it Right Now, lol.

It's late here, so I will have to come back through tomm. (GOD Willing) and fill ya in on the rest of my journey, it's a long one....so I hope your Up For It, lol.

Good Night, and as always....Thank You for reading my Blog (smiles)

SORRY......

2009-10-06T10:19:00.002-04:00

I apologize for Not posting in a while....a lot has been going on since I've last posted, and when I DO find the time...I will Post about it.....but for Now, I will just say.....AAAUUUUGGGHHHH!!!

THANKS for stopping by to read My Blog.....

Guess What's BACK.....

2009-08-22T21:52:00.002-04:00

The FOOT PAIN is BACK......sighhh.

It was gone for a while....a few Months to be exact, but since about last week...I've noticed that I had a lot of Pain upon getting out of the bed, and if I've been sitting for a while....oh, and also if I am on them for too long (like while shopping, out to do laundry, Or even just moving around the house a too much).

They feel like they are swelled up also.....but they're Not.
And don't get me started on the sharp pains that "ring through them" every now & again.....OUCHHHH!!!!

THANKS.....

Reaction from the New Med.....YIKESSS!!

2009-08-14T16:09:00.002-04:00

Well I won't be taking any more of the New Med. Sevella....it did my body REAL BAD the other night!!!
And I ONLY took One dose of it.

I honestly thought I was going to die....all things darn Side Effects started Flooding in Me....Or should I say...."Out of Me".
First off, I felt a little....funny, like things just weren't right....ya know.
Then my hands started shaking.....and I was sweating.....also, my thumb on my Left Hand started to Twitch......badly, like I've never seen before.....TALK ABOUT BEING SCARED!!!!

My Heart Rate went up as well....and then came the the Anxiety, but I was able to Control That through Prayer & "self control" techniques.

Well I guess it is safe to say.....I will NOT be using That Med. Again!!!.....I would rather Live with the Pain & Discomfort, than to have to LIVE like That.

THANKS......

Names of New Meds.

2009-08-09T23:22:00.002-04:00

Okay....the names of the New Meds. I'm are:

Gabapentin 300 mg. (Neurontin).
Propoxyphen-APAP 100-650 MGTEV (Darvocet)......for Pain (PRN).
Sevella (it hasn't come in as yet....pharmacy is still trying to get a hold of some for me).
Women's Multi Vit.
Calcium with Vit. D.

That's It, for Now.

THANKS.....

I had a Doctors Appt. Today with My Rheumy....

2009-08-05T16:12:00.002-04:00

So I went to see my Rheumy. today.....I have to confess, I did not even remember that I had an appt., until I checked my ph. messages on Monday....from Sunday, lolol.
Anywho.....I went, and I was comfortably with the Game Plan.....he is going to Increase the Gabapentin that he has me on (it is not working to it's full capacity....still in alot of pain, but not like before).
He also put me on a Pain Med (can't remember the name as yet, the script is still in the drug store....lolol, but I THINK it is Percocet).
And the other Medicine is one of those New Meds. out there for Fibromyalgia....AND, can't remember the name.
I will get ALL the names of the Meds. as soon as my daughter can get her and go pic them up for me...lolol.

I am excited to try this NEW Regime of Meds.....and GOD Willing it will Work THIS TIME.

I will be giving an Update Real Soon with the NAMES of the Meds......AND, how everything is working for Me.

THANKS for checking in.....

I had the appt. with the Disability Doctors today.

2009-07-27T20:20:00.002-04:00

For the most part, the day started off good....until I had to WAIT in the waiting room for the longest time ever...buy time I got in to see the First Doctor, I was "SPENT"....meaning, I was in soooooooo much pain that I don't know how I got through it.
THEN.....I had to go back out and wait to see the other Doctor (they allowed me to have both visits today so I wouldn't have to return tomm.)...I could barely sit still....I COULD NOT WAIT TO GET BACK HOME.

My shoulders felt like they were ten times their size.....PAINNNNNNFULLLL.
And my Back & Spine were in High Gear...!!!!...something told me to bring my cane, and I did.

I'm STILL in pain......

Now it is just a WAITING GAME I guess Now.....GOD Willing it will go in My Favor!!!

THANKS......

Well the Days are Near......

2009-07-24T22:21:00.002-04:00

Monday & Tuesday that is....lolol.

I have my appt.'s on Monday & Tuesday with the Disability Doctors.......I pray that ALL goes Well & in My Favor!!!!

THANKS......

My Hips & Spine is on FIREEEEE!!!

2009-07-21T19:38:00.002-04:00

Not sure if the RAIN has anything to do with it.....all I know is, IT IS ON FIRE!!!

It literally feels like someone is putting a hot lighter to them......and I am NOT exaggerating either.
I can't sit for long.....Or lay for long, and when I was waking up this morning (late morning), I could barley lay in the bed right....if I layed on my back, IT HURT LIKE CRAZY.....if I layed on my stomach, IT HURT A LITTLE LESS....and when I layed on either side (left Or right), I was able to lay that way for a longer period of time than the other two ways (back & stomach).

It was horrible....

I think while I'm sleeping, I must be OUT OF IT to realize that the pain is there....but as soon as the morning comes.....OH MY GOSHHHH....it let's me know about it with the quickness!!!!!

I will be starting a NEW Med. soon (Gabapentin 300 mg. capsule GRE)....I will start another Thread about that soon.....I just pray that that will take care of Most of My discomfort.

THANKS.......

I got the Call yesterday for my appt. with the Disability Doctors

2009-07-14T19:52:00.002-04:00

They called to let me know when the date & time of the appt. was....it is for the end of this Month, July 27th & 28th...for some reason they do it for two days she said.
I am looking forward to the visits, and I PRAY that all goes well....and they BEILIEVE Me and understand what I am going through.

When I think of ALL those people out there who ARE on Disability.....AND REALLY DON'T NEED IT....it sickens me.....because that is taking away from those like ME who REALLY DO NEED IT.
Anyway....Only GOD knows who will actually get it....and who won't.....I JUST PRAY THAT I AM ONE OF THEM WHO DO.....and I pray for ALL those who really do need it (like me) and are waiting an answer regarding their case...May they get their prayers answered as well.

THANKS......

I can see This is going to be a Longggg Haul...sigghh.

2009-07-09T19:09:00.003-04:00

For the past Two Days, I have been feeling Very Crappy......and yesterday was the first time that I noticed the "knee problems" again.
While I was on the Pred., my knees were not hurting as much as if I WASN'T on the Pred.....and NOW, the Creaks & Pain....and the sound of "leather pants rubbing" IS BACK.

I woke up Stiff.....but not as bad as before, but you can 'bet your bottom dollar' that the Worst of the Stiffness WILL be back....no doubt.

I felt Really Horrible today (NO ENERGY AT ALL, among other things)....but I know the worst is yet to come (because I am not on the Pred. anymore)....I am not looking forward to it to say the least.

Something I am noticing though lately, is the fact that I have been having alot more Indigestion....not sure what THAT is all about, but it was sooo bad last night...I honestly thought I was going into a Heart Attack.
ANYTHING that I eat is causing it.....I will be letting my PCP know about that.

Today's ill health made it Very Difficult to care for my Grands.....but I did it, don't know how....but I did it.
It became much easier when my Granddaughter left....I LOVE HER TO DEATH, but she is Alot More active than my Grandson....she is a Ball of Energy....of which I had NONE of Today.
So when She went home...and it was just my Grandson & I, I wasn't as stressed and could deal with my illness better.....he is soooooooooo layed back and easy-going, I don't have to reprimand him as much as I have to do with my Granddaughter.
She is just sooooo inquisitive....Bless her lil heart, and does not stop inquiring....NOTHING stops her (unless she is ill that is, lol).

Anywho.....I have a long road ahead of me, and I just Pray to GOD that I will be able to Function enough to be an asset to My family & friends when they need me.

Thanks...........

Well....today's visit to the Pulmo. Doctor didn't go over too well either...sigghh.

2009-07-06T21:07:00.002-04:00

Although HE was a Gem, his suggestions for me I wasn't too pleased with.

He wants me to go back to the Same Doctor that had his back to me the whole visit (the Rheumo.)...but I refused, and said that I will stick with the New Rheumo......until He messing up.

He also said that He doesn't think that it is Sarky that's bothering me......He says it is the Fibromyalgia......sigghhhh, once again...I think a doctor is Wrong.

I have NEVER read Anywhere, where it says that one with Fibromyalgia suffers with what "I" suffer with.....He also said that the symptoms I am describing are NOT of what one experiences with the Flu....(I told him that I have Flu Like Symptoms)....He said that they are in line with the Fibromyalgia.....aauuggghhh.....I am soooooooo frustrated to say the least.

He suggested that I get on some Medicine for the Fibromyalgia and see if that works....and I MAY have to try several of them till I find the one that Works.....and if NONE OF THEM WORK, Then he will try another route.....I tell ya, I am sooooooooooo tired of going to doctors right about now.

Again, I felt REAL comfortable with the visit with him....but I am not convinced that what I am experiencing is from Fibromyalgia......I WILL STAND BY MY THOUGHTS OF IT BEING SARKY!!!

Soooo....the prays will continue.

Had a "blahhh" day today......

2009-06-22T17:55:00.002-04:00

I am not sure what is going on....and Why, but....for the past couple days, I noticed that my Sarky Symptoms are coming on stronger than normal with the Pred.

This morning I woke up with extreme pain in my Hips, Spine, Up & Down my legs....and few other spots I can't remember, but I know that it was there.....ANDDD, I feel like crap!!!
I am sooo weak, and sore all over...I feel like I did a ton of exercises the day before.....and I hadn't done Anything.
I refrained from taking any Pain Pills.....don't have much left and what I do have, I may need for a more severe case of the Sarky's.

It really seems like the Pred. is wearing off on me...ALL Day Long I was feeling like this, CRAPPY....but I was trying to hold it together because I had to care for the Grands.
I am praying that tomm. proves to be a better day.....I really felt like staying in the bed all day today.
I am starting to get really worried Now.....because if NO ONE can come up with a Plan to rid me of these symptoms so that I can function day-to-day....What will become of Me.
I won't be able to care for the Grands....Or anyone else for that matter, even Myself....I will literally be Bedridden....and I'm not joking.

I called and made an appt. with a Pulmonologist....and that is set for July 6th (GOD Willing), I tried to get it for a sooner date....but wasn't able to get a slot for the early morn.....Oh Well, it is only two weeks away.
I had called my PCP to see if he can take me off the Pred.....just so "I" can see what will happen, but he suggested that I stay on it until I see the Pulmy. doctor.

Ooohhh, I dread to find out how the next few days are going to be like......

No News, is Good News..."Well, That's what they Say"!!!

2009-06-18T18:46:00.003-04:00

I was told that I needed to "update" my Blog with some info....lolol, but to be honest.....I really haven't a thing to say.....which I am not sure if that is Good Or Bad, lolol.

I am still having Hip & Spine Pain....and it is REALLY hurting today, I think it is because of the Rain we are having.
Other than that....nothings changed.

I am still waiting to hear back from SSI/SSDI.....but they did say it would take a few months before I'd hear Anything.
I spoke with a friend of mine yesterday, and she gave me a Name & Number to Her Lawyer....so, I am waiting to hear what they say...and if I AM denied, then I will be giving this guy a call.

I've become a Facebook Junkie...lololol, and loving it up, lolol...I'm able to be in touch with my Family & Friends.....so that nice!!!

Also, waiting for next week to roll around....my youngest Son is about to Graduate from High School (he is the one that is Physically & Mentally Challenged).....it should be Very Exciting!!!

Well....that's it, For Now....Until next time.....!!!

THANKS.....for reading my Blog.

Naimah

hhhmmm....wondering if Sarky is in My Nervous System Now??

2009-06-11T19:50:00.002-04:00

I THINK.....since yesterday, I've been having this "twitch" in my Thumb on my Right Hand.
All of a sudden, out of nowhere....it will start twitching, and it even throws me off if I am in the process of doing something with That Hand.

It is a good thing that my New Rheumy. is asking that I see a Neurologist, because if this goes on for too long....I'm gonna need it looked into.

Alittle worried Now.......

Surprisingly....I had a Good Day yesterday!!!

2009-06-09T16:47:00.002-04:00

Just a few "minor" aches & pains here and there....but overall, it was Good.

The weather was Great, and we had to go out of town to my son's doctors appt.....had packed a Cooler with Sandwiches & stuff.....and one of the Grands, lol.
The doctors visit was longer than I expected it to be....but it was an early appt., and when we got out....the waiting room was Packed, so I am totally grateful that ours was early.

The ride there & back was pleasant also.

Now Today, well that is a different story......oh well, you can't have it all....lolol.
I am feeling alot of aches & pains today.....and I am thinking all the rain we had overnight & this morning may have something to do with it.
My hips & spine are reallyyyy giving me problems today.....but I am dealing with it.....have no other choice But Too.

I need to make some doctors appt.'s soon, but can't do so until I have enough money for co-pays.....Sad isn't it, can't go to the doctors because you can't afford even the Co-Pay....aaauuuggghh!!

I think I will have to set some time aside for next month for all the visits.....maybe even borrow some money from the "kiddos".....I'm sure they won't have a problem helping out for that.

Well....it didn't turn out the way I'd hoped, but....

2009-06-03T16:16:00.003-04:00

The visit today with my New Doctor didn't turn out the way I'd hoped it would....but he did say he would treat me for the Fibromyalgia.......but not the Sarky.

He is recommending that I see a Lung Specialist for the Sarky.
HE SAID.....that Rheumy's don't treat you for Sarky....Only Pulmonalogists (sp. ck.)......WHATTTTT!!!

Then why the heck was I going to see my Old Doctor for.....he was a Rheumy.....and I was seeing him for my Muscle & Joint Pain that came from.....Sarky.

Anyway, I wasn't "blown over" with him to say the least......but at least he will treat the Fibromyalgia.

I have to call my PCP and see who he wants to send me to next (Pulmonary)....I know one thing, it won't be my Old Pulmo.....he blew that yrs. ago.

I am not overjoyed about the whole day......but at least SOMETHING came out of it.
He also prescribed me some New Meds. to take for the Fibromyalgia Pain.....boy my Spine is still hurting.
I still have to call the Pharmacy to see what Meds. He ordered though.....I'm not paying for something I can't take (that I tried before and didn't work).

I will post later, what he actually called in for.

Now the Spine is acting up!!!!

2009-06-01T19:23:00.002-04:00

It had been doing so all along.....but after the weekend, it REALLY went crazy.

My son got Married on Sat....and I was taking Tons of Pics....so all that back & forth did some damage on the ole' Hips, Knees & Spine.
I felt some of it That Night.....but it didn't Really get to me until the next day.
And I mean ALL DAYYYYY.

Sunday night was soooo horribly.....there was NO position that I could be in...Not Sitting, Standing....Or even Laying Down........AWFUL!!!

And today it is Still Hurting......
I tried to bend down......and not with my knees, Cause Ya Know That Ain't Happening.....and I thought my back was going to dislocate itself some how.......I was sooo scared, and I screamed out soo loud that My Mother said....."let me do it".

I pray that I can get some sleep tonight, and that I won't be in That Much Pain.

Man....this is bad!!!!

I had my Ph. Confrence today for SSI/SSDI

2009-05-29T22:08:00.003-04:00

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 it....lol, 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.

My Left Hip......

2009-05-26T18:49:00.002-04:00

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 BURNINGGGGGG.....it 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.

THANKS......

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

2009-05-23T17:13:00.002-04:00

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!!!!!!!

sighhhhh.........

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

2009-05-21T19:18:00.005-04:00

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,

2009-05-21T16:46:00.003-04:00

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 done.....like 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 place......it 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......!!!!!

THANKS.......

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

2009-05-19T18:36:00.002-04:00

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.

PRAYERS "DO" WORK!!!!

2009-05-18T21:04:00.002-04:00

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.

Anywho......

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!!!!!

THANKS......

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

2009-05-15T15:35:00.002-04:00

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 Now....it 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 weeks....so 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 Sarky....to 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 Monday.......so I guess I will swing back through here THEN.

THANKS.........

AAAUUGGGHHHH......!!!!

2009-05-12T22:38:00.003-04:00

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 Days......it 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.

AAAUUUGGGGHHHHHH......!!!!!!

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

2009-05-06T17:47:00.004-04:00

A lot of focus is on the amount of Pain I have.....but technically, I don't Only have Pain....I have FEVERS, WEAKNESS,TIREDNESS....an 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 think....so 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 for....is 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!!!!

2009-05-06T17:14:00.002-04:00

Last night...it came to me, "I think it is time you started That Chapter in your Life"....so 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)....at least I got it out of the Way.

Still with the Chest Discomfort

2009-05-04T21:45:00.003-04:00

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).....like 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).

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

2009-05-03T23:22:00.003-04:00

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 DRUG.....it 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 meds....it 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 doctor....to see if I can get in to see them soon....in 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....!!!

2009-05-03T23:16:00.002-04:00

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).

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

2009-05-01T15:05:00.003-04:00

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 happened....it 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.

2009-05-01T14:13:00.006-04:00

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 that....you 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 Here....it 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 LOW....it 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 much.....do 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......

2009-05-01T12:44:00.004-04:00

My doctor confirmed the Fibromyalgia & Osteoarthrits.....which it what he said over the ph. last week....so 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 Med....to 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 anymore......it 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 house......so I went it alone.

TODAY is Worse than Yesterday.....sigghhh.

2009-04-30T19:33:00.002-04:00

Today is Worse than yesterday....for some reason.

I am sooo glad that tomm. I will be able to talk to the doctor.....I pray that it is not postponed.

Speaking of "postponements".....My daughters Surgery was postponed today, and it is Now suppose to take place tomm. morn.....GOD Willing.
So NOW I will have to take the baby along with me to the Doctors (her daughter), AND my husband, so he can keep an eye on Her.
I WAS planning on keeping the both of them Home, but since My daughters surgery will be tomm. morn.....I feel it best for them both to be with me, that way my granddaughter won't give my husband a run for his money.

GOD Willing, things will go smoothly for me at the doctors.....and even More Smoothly for my daughter & her Surgery.

Very "Blah-Zay" today.

2009-04-29T19:47:00.004-04:00

Not having too much of a Good Day today.....my legs are pretty painful, and the other symptoms I experience on a daily basis, are swinging through like the wind.

Especially my Left Knee.
For some reason, this knee gives me the Most Problems.....maybe the Osteoarthritis is more in That Knee, than it is in the Right Knee.

My hands are not giving me too much problems today, but yesterday they were....so that's a plus.

Overall.....I am off & on with my feelings today.
GOD Willing, tomm. will prove to be a better day.

This coming Friday.....10am.

2009-04-28T19:56:00.004-04:00

I have my "two week" visit to my doctors this Friday.....after the Last Visit, I plan to come up in there with Full Meds. in me, lolol.....I am NOT doing That Again.

He is suppose to discuss with me, the fact that He Thinks I have Fibromyalgia & Osteoarthritis.
Not sure how we plan to go about "bandaiding" the situation.....but I am All Ears.

I also need to discuss with him the fact that the "New Med." he put me on, isn't working.....so what next!!!

I'm not sure if I am going to take the hubby with me this time....My daugther is going to have surgery on Thurs....and I may need him to stay home and take care of the Grandbaby.

Boy.....I've seen more doctors this Year Alone, than the Law Allows....Or should I say......than the Insurance Companies Allow....lololol.

I did a little Too Much yesterday.....Yikesss!!!!

2009-04-28T19:31:00.004-04:00

I thought I would do a little "exercising" yesterday.....and after "swinging my hips" about, I realized that that might not be the way to go for me, lololol.
It really isn't funny, because at the end of the Day.....I wasn't able to hold A DARN THING, not even a pen Or pencil to jot something down.....my hands hurt sooooooo bad, I really could not believe it.
They were actually "throbbing"....I could feel the muscles pulsating, and I kid you Not.

They were hurting because, the type of exercising I was doing was......DANCING!!!!
I was having a good ole' time with the Grands....and they were having an even Better Time than I, lolol.....
But when it was All Said And Done.....the ole' hips and fingers (from snapping them) don't work like they used to anymore.....and THAT is something that I just have to accept.

This morning when I got my son up for School, I thought I had had Hip Replacement Surgery....and I was recuperating from that.....Yikeessss!!!!
I could hardly walk.

I promised myself at that moment....that I WOULD NOT do that again, and I won't.....I promise!!!

I couldn't sleep either.....if I got on One Side, it hurt....and then I tried the Other Side.....that hurt too....even laying on my back hurt like the dickens.....I had pillows going in all different kinds of directions & positions.

After my Daughter put the mattress down for the Night (My Granddaughter & I sleep on it when she is over My House)....I tried to help out by putting the Pillows down on the bed....and I could not even pick them up right, I had to use the sides of my hands to even get some kind of grip.....and then to toss them from where I was sitting, ohhhh myyyy goodness....my son was like...."that's the best you could do", and I said "Yeaahhhh......".

I should have LISTENED to the advice the Experts give ya when they say....."NOT to do too much when you think you are having a Good Day"....because it will deff. come back to bite you in the Rear at the end of the Day.....for real!!!!

I'm surprised I didn't wake my Granddaughter up with all the movements I was doing.

Tonight should be better....it is Cooler to start with, and I didn't do Any Dancing Today....lolol.
I pretty much just layed around and watched the Grands do their Thang....lolol.....aside from the little bit of running around Miss Maari (my Granddaughter) had me doing every time she was into something she wasn't suppose to be in, lolol.

Oh Wellllll....here goes nothing!!!

THANKS......

Tingling & Numbness in some Extremedies.

2009-04-24T19:44:00.002-04:00

Lately, I have been feeling an extreme amount of Numbing & Tingling in some of my ext remedies....like my Arms, and parts of my Legs.

While watching TV, Or reading something on the computer.....all of a sudden, I will feel some numbness in my Hands, Arms and even my Feet.
With my Arms, I noticed it will happen if I lay on my Left Side while watching TV Or even if I am sitting up watching TV....and then as soon as I move it, I feel numbness and then the Tingling starts.
The other morning after waking up for the Day, it happened again....and usually I could just "shake it out" Or "work it out" by rubbing my hands....but not this time, it stayed like that for quite some time....and I started to get a little worried.

With my Legs, if I lay on the Left Side it almost ALWAYS happens....along with Major Discomfort & Pain....for some reason, THIS LEG (the left)...gives me More problems than the Right One.....but I still have the same problems, just not as much on the Right.

My Feet....Well now that's another story, one that I could write a short story about......sighhhh.

If I SIT TOO LONG....they Hurt...IF I STAND TO LONG....They Hurt....WHEN I GET UP IN THE MORNING....I can't bare weight on them AT ALL!!!!!.....and it continues like that throughout the Day.

The tingling & numbness is really not a NEW THING, but it is becoming more "evident" if you will, in the past few weeks Or so.

The "NEW" Medicine Doesn't Work.....Now What!!

2009-04-24T19:35:00.002-04:00

So Now What......

When I go back to the doctors on the 1st of May, I have to tell him that the New Medicine he put me on.....the Meloxicam 15mg (anti-inflammatory medicine), DOES NOT WORK!!!

So far it has been 3 weeks since I started on it.....and I KNOW I should have felt some kind of difference by now, but NOPE.....Nothing!!!
I still have the same Pain....If not Worse......and it is really disturbing me to say the least.

How many types of Meds. will I have to TRY.....before I can get the RIGHT One......aaaauuuggghhh.

When I think of it.....My body actually feels like I should be 80-90 yrs. old, not that I know how they feel on a Physical Level, but from back when I used to be a CNA.....I would LISTEN to my residents when they Spoke to me about How They are Feeling.....and let me tell ya, I FEEL LIKE I AM THERE!!!!

Definition & Symptoms of OSTEOARTHRITIS

2009-04-20T23:49:00.003-04:00

Definition
By Mayo Clinic staff

Osteoarthritis, sometimes called degenerative joint disease or osteoarthrosis, is the most common form of arthritis. Osteoarthritis occurs when cartilage in your joints wears down over time.

Osteoarthritis can affect any joint in your body, though it most commonly affects joints in your hands, hips, knees and spine. Osteoarthritis typically affects just one joint, though in some cases, such as with finger arthritis, several joints can be affected.

Osteoarthritis gradually worsens with time, and no cure exists. But osteoarthritis treatments can relieve pain and help you remain active. Taking steps to actively manage your osteoarthritis may help you gain control over your osteoarthritis pain.

Symptoms
By Mayo Clinic staff

Osteoarthritis of the spine

Osteoarthritis of the hip

Osteoarthritis symptoms often develop slowly and worsen over time. Signs and symptoms of osteoarthritis include:

Pain in a joint during or after use, or after a period of inactivity

Tenderness in the joint when you apply light pressure

Stiffness in a joint, that may be most noticeable when you wake up in the morning or after a period of inactivity

Loss of flexibility may make it difficult to use the joint

Grating sensation when you use the joint

Bone spurs, which appear as hard lumps, may form around the affected joint

Swelling in some cases

Osteoarthritis symptoms most commonly affect the hands, hips, knees and spine. Unless you've been injured or placed unusual stress on a joint, it's uncommon for osteoarthritis symptoms to affect your jaw, shoulder, elbows, wrists or ankles.

http://mayoclinic.com/health/osteoarthritis/DS00019

Tender Points of FIBROMYALGIA

2009-04-20T23:15:00.003-04:00

Unfortunetly, I haven't mastered the art of Posting Images on my Blog as yet, lolol....but as soon as I get the help to do so.....I will put up the Chart that shows the Tender Points.

Tender points

The 18 tender points associated with fibromyalgia occur in symmetrical pairs from the back of your head to your inner knees.

I HAVE All of the POINTS they speak of......OoooKayyy!!!

Symptoms of FIBROMYALGIA

2009-04-20T22:47:00.003-04:00

These Articles come from the Mayo Clinic (a very well known Clinic).

Symptoms
By Mayo Clinic staff

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.

Widespread pain and tender points

The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

Back of the head
Between shoulder blades
Top of shoulders
Front sides of neck
Upper chest
Outer elbows
Upper hips
Sides of hips
Inner knees

Fatigue and sleep disturbances

People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.

Co-existing conditions

Many people who have fibromyalgia also may have:

Chronic fatigue syndrome
Depression
Endometriosis
Headaches
Irritable bowel syndrome (IBS)
Lupus
Osteoarthritis
Post-traumatic stress disorder
Restless legs syndrome
Rheumatoid arthritis

Causes
By Mayo Clinic staff

Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:

Genetics.
Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.

Infections.
Some illnesses appear to trigger or aggravate fibromyalgia.

Physical or emotional trauma.
Post-traumatic stress disorder has been linked to fibromyalgia.

Why does it hurt?
Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals.

Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.

Tests and diagnosis
By Mayo Clinic staff

Tender points
The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:

Widespread pain lasting at least three months

At least 11 positive tender points — out of a total possible of 18

Tender points
During your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor's fingernail bed. These 18 tender points are a hallmark for fibromyalgia.

Blood tests
While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:

Complete blood count
Erythrocyte sedimentation rate
Thyroid function tests

These were just a Few things posted about FIBROMYALGIA.....if you want to read more about this Condition, click on the link below:

http://mayoclinic.com/health/fibromyalgia/DS00079

I AM MORE CONFUSED THAN I WAS BEFORE!!!

2009-04-20T22:08:00.002-04:00

Confused is an understatement.....!!!

My doctor just called me back (at 10pm)....and he is telling me that the Osteoarthritis has NOTHING to do with the Sarky (that it is possibly some Hereditary thing).....and that My ACE Levels look Great........Whatttttt!!!!!

So why am I in ALL THIS PAIN, and going through ALL THESE SYMPTOMS!!!!!

Well HE tells me that He is SURE that it is from the Fibromyalgia......and we will talk more about That when I go to see him next week.

Now tell me, wouldn't you be at your Wits End right about now!!!

When he told me about the Fibromyalgia last week, I looked it up on the computer and surprisingly so....I basically "hit the mark" for All the symptoms.....So maybe IT IS Fibromyalgia.....and Maybe Sarky IS in Remission......Wowwwww.

I almost burst into tears when he told me that My ACE Levels looked Great, and that the Osteoarthritis had Nothing to do with Sarky.....but what is he talking about, Arthritis is One of the Symptoms of Sarky....so why wouldn't the Osteoarthritis be from Sarky.....aaaauuuggghhh!!!!

I prayed for some Concrete Results.....and I DID get some answers.....the Diagnoses of the Fibromyalgia is a NEW THING, so I guess my prayers were answered.
I was sooo stuck on getting back some answers stating that Sarky is behind All of this...but maybe it is really the Fibromyalgia doing all this damage.....hhmmmm.

Sooo, should I change the name of this Blog to...."Living with Sarcoidosis AND Fibromyalgia", lololol.
It's good that I can find a sense of Humor out of all of this.....Right.

Got a Call from My Doctor Yesterday

2009-04-20T16:56:00.002-04:00

My doctor called me yesterday (on a Sunday), but I wasn't able to get the call....and he left a message stating that the Results of the X-rays of my hips & knees showed that I have Osteoarthritis in them.....uummm, I already knew that....well I knew I had Arthritis in them....but not the "Osteo" part.
So basically, he didn't really tell me anything New.

I called his office back and left a message for him to call me.....I want to ask WHY do I have the Osteoarthritis....is it from Sarky, Or something else.
Also, WHAT are the Results of the Blood Work....I wasn't going to find any of this out till I went in to see him on the 1st of May, but since HE CALLED Me first...I figured I want to know EVERYTHING!!!!

I will post more later, after he calls me back....."IF" he calls me back that is.

Had the ol' Knees & Hips "Xray-d" Today

2009-04-18T21:51:00.002-04:00

GOD Willing, SOMETHING will show up THIS TIME on the Results of my Xrays today.
I have to go back to see my doctor (a Rheumatologist) on the 1st of next Month.....and I am praying that ALL the Blood Work & Xrays will show what I've been feeling the past 3-4 yrs.

It is sooooo important that My Doctor will be able to know for sure what has been going on with me in between Visits.

Oh...and btw, I had Xrays of my Hips & Knees (and it was a bit uncomfortable trying to lay there for those xrays too)....in the past Nothing would show up, but this time....I am praying like crazy that something Will....I need for My doctor to FINALLY see what this Diease it doing to Me!!!!!

Leg Pain....like a dang on Tooth Ache!!!!!

2009-04-16T00:37:00.003-04:00

My legs (both of them).....were hurting like a Dang On Tooth Ache today.....All Day too.
But funny thing was.....it was ONLY my KNEES that hurt (still do as I type this).

You would have thought it was going to Rain Or something......yeah, I know....it's suppose to be an Old Wives Tale, but let me tell ya.....IT'S TRUE!!!

No matter what I did to sooth the pain.....IT WAS THERE, and more intense with each try.
Finally, I decided to just get right up and go outside and do something.....maybe THAT would take the pain away.....I mean, NOTHING ELSE WORKED.

I tried to get a little work done in the yard....to take my mind off of the Pain, and it DID help some.....but not all the way, but SOME was better than NONE.

Tomm. promises to be an even better Day than Today.....so, I guess I will try it out again (working in the yard) just in case the Pain tries to make a second appearance.

Oh, and btw.....the Pain Meds. only took about 75% of the Pain Away......go figure.

Have you Ever Noticed.......

2009-04-13T20:10:00.002-04:00

Have you Ever Noticed, while Suffering with a Chronic Illness (Or a Short Term one as well).....that while having an "episode", all the sudden....your body starts to React to the Pain/Discomfort....before you Even Realized it Yourself.....???!!!

AMAZING RIGHT....

Well the other day, while sitting on the edge of my bed (not sure what I was doing in the meantime)......my leg started Rocking and I began Humming.
THIS is the very things that I will start to do when Sarky is "raising up" on me.

It actually startled me when it happened.....because I wasn't aware that Sarky was even there at the time....I must have been in Deep Thought to NOT Notice Sarky let me tell ya....and when I realized I was doing it for That Reason, I said to myself....."Wowwww, it is like clock work that these motions will react to the Pain....letting me know, in an indirect way....that once again, Sarky is demanding My attention".

Had My Visit Today

2009-04-13T18:16:00.003-04:00

I had my doctors visits Today.....and it didn't go TOTALLY as planned, but I was able to get a few things Said.

It didn't go as planned because upon NOT taking my meds.....I became too ill to get out all the things I wanted to discuss with him......I mean, I was in sooooo much pain...it had me confused.
I was soooooooo weak, I thought I was going to pass out.....and it is a good thing my husband was with me, because for the amount of time I had to wait to see him....if I'd been by myself, I think I would have deff. been on the floor when he finally came in the room.
I basically used my husband as my "Cane".....I walked soo far up against the Wall on my way to the exam room....and then used my husband (& the doctor) to get up on the exam table.....it was awful.

He asked me why I was in soo much discomfort....and I told him that I hadn't taken my meds yet for the Day (which was MY Plan....but it backfired on me because I was too weak & in pain to talk).
I told him the reason why I didn't take them, it is so he could see how I am WITHOUT my meds. on a daily basis.....I also said that whenever I visit with him.....I never get the chance to Or forget to...tell him what had been going on the Previous Months.
So, while I was trying to talk....he was jotting down what I was saying......I was explaining to him what my symptoms were.

He seemed concerned....but at the same time, when I told him what meds. I refused to take for the morn. (the Vicoden), he had the nerve to tell me that the Pain & Discomfort that I was having, was probably due to me being on the Pain Meds. for soo long........"WHAT, ARE YOU SERIOUS"!!!

I told him that NO, it wasn't because of that....and that from DAY ONE, I have had these Symptoms WITHOUT even being on ANY Pain Meds.
I didn't start taking Pain Meds. until I came to see him.....and that was a little over a yr. ago.

I was in Pain & Furious at that same time.

He then tried to blame my Pain in My knees on My weight.......AGAIN, I have had the Knee Pain since DAY ONE as well.....the Weight Gain may be making the pain worse, but the Pain was Deff. there before I got Heavy......I PROMISE YOU THAT.
And btw, the Weight Gain is from the other meds. I'm on for the Idio Pathic Angioadema (from my PCP).

He decided to take Blood Work (to check my ACE Levels), YAYYYYYY....because he seems to think that Other Things may be going on with me besides the Sarky (just great)......he mentioned, Lupus & Fibormyalgia.....along with some other things that I can't remember.
I WAS FLOORED.....I mean, My Mother DID mention to me before about possibly having the Fibormyalgia.....but I didn't think it was That, I just thought that Sarky was really doing a number on me.

Well, I am praying like crazy that the ACE Levels prove that I am indeed having Sarky symptoms.....but than again, I have been told by other Sarky Sufferers...that even if you are having Full Blown Sarky symptoms....Your ACE Levels might not show it as so.....so the prayers have been flowing All Day Long (I am even asking EVERYONE I speak to, to say a prayer for me for it as well)......I NEED THESE RESULTS TO BE POSITIVE!!!!.....just to prove that what I am experiencing is indeed the TRUTH....and not a LIE......AND NOT FROM THE MEDS. I'M ON.
Btw, I think this is the FIRST TIME that I've had my ACE Levels checked....for real.

He also wants me to have xrays of my hips & knees.....because I told him that my knees have been Giving Out on me and I have been needing to use my Cane for Support (I also need the Cane for when I wake up in the Morning & when I am on my feet for too long in the Day...because My Feet hurt like CRAZY).

So, GOD Willing....I plan to go up to the Hosp. on Wed. Morning and have the Xrays done.
I don't know what they will find, because I've had CAT Scans done on them.....and other Diagnostic Exams, and they All showed NOTHING.....except that I have Arthritis throughout my body and mainly my left knee......WELL I COULD HAVE TOLD YA THAT.

I am grateful that my doctor ordered these tests, and I think by me going in today WITHOUT my meds. in me.....played a Huge Part in getting some well needed attention.

As he was about to take an important call.....I squeezed In that I wanted the documents of my Blog to be kept in my File, and he said that he would do that.....and he did.....but I also asked that when he had the time, could he PLZ take a look at them....and possibly come to my Blog also, and he said that he would......but I have a feeling that he won't (maybe because of time restraints)......but I still prayed that he would.

Overall, I think the visit went as well as it could considering the condition I was in.....and the fact that I had my husband there to "back me up", was a Plus (thank you Babe....wink).

He wants to see me again in two weeks for a follow up.....so GOD Willing, I will be at THAT Appt. as well.

Oh Shoot.....I forgot to mention that he had a HUGE FIT about me being on the Vicodine for soo long......uummm, hellooooo....you were giving me the NEW Scripts EVERY time I came to see you every 3 months......where do you think the meds were going......If you thought that I shouldn't have been on them, why were you giving me the New Scripts in the first place.....and why would I need the New Scripts AGAIN in 3 months if I wasn't suppose to be taking them like I was.
And besides....the Anti-inflammatory Meds. He was giving me before.....DIDN'T WORK....None of Them.
So he wrote out a script for a New One.....it is called Meloxicam 15 mg.....I will see how they work for me.....although I am a bit worried, because the side effects are One to be Highly Concerned about.....Whoa!!!!
But I will take them for two weeks and see what happens.

I regret not having This conversation with my doctor a long time ago (well I did when I first came back to see him Last Yr.....but I guess with All his patients to attend to Or All their different concerns, MY Illness was not remembered...and I can understand That).....but from Now On, I am going to be ON IT....it may take my visit just a little bit longer.....but I will TRY to get Any New thing in, and also tell him what has taken place since Our Last Visit......GOOD, BAD Or INDIFFERENT!!!!!!

It is up to ME to keep him updated the Right Way.....and it is up to Him, to LOG IN the Correct "happenings" with my case.......SO I BLAME THE BOTH OF US, We deff. should have been on Our Game better than We have been.

Until next time.....

I have been Very Busy lately......sorry!!! (again)

2009-04-12T20:59:00.002-04:00

I think I might have mentioned that I would be MIA for a bit (Missing In Action) and that I would TRY to post at least Once a Week on here.....but things have been soo busy around here and I haven't found the time to do so.....my apologies to you All who come here to read what I have to say!!!!

I have been busy with the Grands, my daughters health (which GOD Willing she will be rid of that dang Gallbladder soon)....and of course, My Patio that I'm attempting to build.

I am at the End Stages of the Patio, and so soon as IT is done....I will be able to post more.

It is doing a number on my body too.....even the slightest of work that I do, really shows at the end of the Day....Whew!!!
I am grateful for my Meds. though....without them I don't know what I'd do (NOT do the Patio that's for sure).

Sarky it showing me New Things these past few Months.....like, Swelling of the Fingers (haven't seen That since a few yrs. back), My Face is getting terrible looking....the acne I get is horrible.

In the past, I would get a pimple Or two on my face....but NOW, it is like High School all over again....and on top of That, it is leaving marks on my face like you wouldn't believe.

Now the reason why I blame Sarky is this......I've ALWAYS messed with my pimples, and it NEVER turned my face like this before.....My face literally looks like I have patches of Dark Skin placed in certain places.....I can't remember EVER having an issue like This before, so it has to be Sarky......RIGHT!!!??

I think my doctor may want to send me to a Dermatologist....and I'm cool with that, because SOMETHING Needs to be done....I can not go on with Life looking like this.

Another New Thing (well not soo New.....but it has been a while since the last time I've had it) is me being Tired a lot more now.....I haven't had that feeling in a long time.

On another Topic......

I typed out a few posts from This Blog, so that I can share them with my doctor tomm.....and I pray that He DOES take the time out and actually look them over.
I go to visit him every 3 months....but we just discuss how I am feeling NOW, Or the past few days prior to me coming to see Him.......We NEVER talk about how I've been the past few months (the months prior to that Days visit)....and He NEEDS TO KNOW what's been going on with me, I mean...HE IS my doctor....isn't He.

And I plan on NOT taking my morning Meds.....just so he can actually see what my day would be like without them.....and it will not be a pretty picture I tell ya that much.
I just need for him to know what I go through on a daily basis with this Sarky.....and I also want to make it clear of what I am being treated for.....is it for Sarky....Or for Arthritis!!!!........it NEEDS TO BE established NOW.
And I would like it if He would KEEP my "transcripts" of this Blog, inside of my File as well.....I want it documented.

Anywho, I will keep you updated on things....as they develop.

Until next time......stay Healthy & Safe!!!....and THANKS for taking the time to read my Blog!!!

Naimah (aka Allana)

I FEEL LIKE CRAP!!!!!!

2009-04-12T20:44:00.002-04:00

Not feeling too well right now, and not too sure Why......I don't think it is because I hadn't taken my meds. as yet, because it is not time to (I have like a half hour left).....but for some reason, I am feeling Real Weak, like I just am not myself.

As I was doing the dishes, I thought for sure I was going to faint....I didn't say anything to anyone, I just waiting it out to see how I was going to feel in a few.
But now I am upstairs, and I ate something and I took my Eve. Meds. (about 20 mins. too soon)...but I still feel like Crap.
Maybe if I lay down some, it will go away.....not sure, but I am praying I will feel better.

I have a doctors appt. tomm. morning, so if I am STILL feeling the same way....at least I will be There and He can asses me.

I really don't understand it, I was fine earlier......I was even out in the Yard trying to do a little work on the Patio I'm trying to build......maybe I did too much, but how could that be....I didn't do any more than any other time......what is going on.

Maybe it has to do with my Peri Menopause......who knows, but I know for sure......I AM NOT MYSELF RIGHT NOW!!!!

I have the Normal Aches & Pains in the Joints, but I also feel Very Weak & without Energy.....you know, like when you are coming down with something.....like the Flu, Oh Wait.....it probably IS Sarky, just trying to turn the tables a little.....you know, throwing me a "curve ball"....."shaking things up a bit"....well if so, than I would have appreciated a little warning beforehand.....I mean, don't I deserve at least THAT Much Sarky!!!??

I know it sounds like I am trying to make "light of this", but I really do feel like Crap.....and it is NOT the Normal Crap, it is a totally different Crap.

Naimah (feeling like CRAP)

I Want to Apologize

2009-03-29T16:38:00.003-04:00

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!!!

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

2009-03-24T21:55:00.004-04:00

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

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

2009-03-18T22:21:00.003-04:00

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!!!

2009-03-18T21:39:00.002-04:00

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!!

2009-03-18T11:35:00.003-04:00

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

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

2009-03-16T21:54:00.005-04:00

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

Oops....Spoke to Soon!!!

2009-03-14T20:09:00.004-04:00

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

2009-03-14T17:42:00.002-04:00

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!!!

2009-03-14T00:16:00.001-04:00

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

2009-03-14T00:14:00.002-04:00

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

More Info. from FSR (a very good site)

2009-03-11T15:54:00.005-04:00

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).

2009-03-11T15:14:00.003-04:00

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....??

2009-03-11T12:51:00.002-04:00

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...!!!

2009-03-11T12:26:00.003-04:00

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!!!

2009-03-11T12:18:00.002-04:00

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.

2009-03-11T12:05:00.002-04:00

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"!!!!!

2009-03-11T11:53:00.002-04:00

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

Continue.....

2009-03-10T18:41:00.002-04:00

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!!!

2009-03-10T17:47:00.005-04:00

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......

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

2009-03-07T17:49:00.002-05:00

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

2009-03-07T17:36:00.002-05:00

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

Right hand....Ring finger!!!

2009-03-06T21:28:00.002-05:00

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

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

2009-03-04T21:00:00.002-05:00

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

I think I may be Retaining Water

2009-03-03T23:06:00.003-05:00

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.??!!

2009-03-03T22:10:00.005-05:00

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

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

2009-03-02T20:49:00.002-05:00

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.

2009-03-02T19:41:00.003-05:00

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......

2009-03-02T19:19:00.003-05:00

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"........

What is Sarcoidosis?? --- NHLBI

2009-02-28T20:32:00.004-05:00

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

2009-02-28T20:13:00.003-05:00

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"

2009-02-28T19:34:00.003-05:00

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"

2009-02-28T17:54:00.003-05:00

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.

2009-02-28T17:32:00.003-05:00

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......!!!!

2009-02-28T00:22:00.003-05:00

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

2009-02-26T23:51:00.001-05:00

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