Idiopathic Angioadema

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

Idiopathic Angioadema.....

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


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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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




Naimah

The Meds I am on

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

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


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

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

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


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

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


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

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


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

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

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


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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

Zantac 75 --- For the Angioadema.

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



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






Naimah

CONTINUATION of....The Begining!!!

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

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

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

This went on for Months....

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

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

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

It was horrendous.

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

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

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

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

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

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

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

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

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

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

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

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

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

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





Naimah

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Patience And Gratitude

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

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

Taken from Fortress of a Muslim