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Determined to turn IT all around

Posted Oct 13 2010 10:00pm

The discussion of our (Chronic illness sufferers) relationship with our doctors has popped up throughout the web today on blogs as well as on Facebook.  As a sufferer of a chronic illness (two in fact) that has mystified the science world, medical world and our government for decades, the doctor / patient relationship continues to prove to be the most challenging of all our relationships.

As I mentioned yesterday… I received much good news from the VA for which I am abundantly thankful.  I was also hit with some news that, to be quite frank, I’m still trying to wrap my brain around.

I was able to get into the eye clinic and get my eyes checked out.  I have been having a lot of problems seeing plus I been having these headaches and floaties in my vision.  Anyway, the doctor thoroughly checked me out.

While my vision has gotten worse, my eyes are in great shape.  The only concern the doctor had concerning my eyes was the floaties and I was advised to go to the hospital right away if I started seeing floaties that are coming down like snow or if I see lightning.  That is an indication that my retina is tearing (not the word he used).

The floaties I’m seeing now are apparently the early stages of the gel behind the eye drying out so that is the reason for the warning.  In addition, this nice doctor told me that waiting too long has serious consequences.  So, I will do as he suggested.

I was able to get two birth-control glasses for free and should have them in 2-3 weeks.  The distance lenses are kind of funky – edgy – but the ones for reading are grandma Moses glasses.  Yikes.  And in Blue.  Double yikes!  But they are free and I’m thankful I will be able to see while I get my apartment refurnished.  After that, I can go get the frames of my choice and have the VA put lenses in them for me.

In addition, I was granted (in my later appointment) authorization to go to any hospital whenever I need in relationship to my lungs!  No more bills!  Plus, if all goes according to plan, I will be receiving an air purifier again thanks to the VA.

In the afternoon, I saw my lung doctor whom I like a lot.  He is an exceptionally nice man.  First, we went over how my treatment is not working.  Controlling the breathing episodes/asthma means I don’t use the emergency inhaler more than 2-3 times a week.  I’m using it every 2-3 hours, every day!

I was then told that what I have is called, RADS – Reactive Airway Disease.  Similar to asthma but not the same.  It’s onset always occurs in situations just like mine where I was exposed to a lot of the Kilz toxic chemicals.  My doctor also told me that this is a nasty illness.  Very had to manage.

On the good side, he was amazed at how healthy my lungs are.  I passed all my pulmonary tests with flying colors.  He mentioned I should thank God for that one (and I do).  However, my lungs are now hyper-reacting to numerous triggers and the list is growing.  He suggested that I need to stay away from the triggers but I asked how?  They seem to be everywhere.

I then thought to ask him about these charlie horses I have been having.  I’m talking bad.  My right calf is having so many of them that if you touch the skin, I cringe!  The skin and muscles are so sensitive, I don’t even want clothing touching them.  In addition, I’m having these charlie horses in my toes, my ankles and my arches.

There are times my legs are so sore and stiff that getting up off the airbed (7″ off the ground) requires me to sit on the edge of the bed, lean forward so my head is towards the floor, put my hands on the floor and push myself up.  I can’t get enough strength in my legs to get up.  And when I straighten I need to wait a minute until my legs get unstuck.  Plus, the first few seconds I walk, I’m usually limping and shuffling.

I’m also having serious body aches and my bones feel like they have been kept in the freezer!  My muscles and body are just achy, stiff and hurting.

I just assumed I was having a flare-up and for some odd reason I couldn’t get it under control.  But, I thought, just maybe I should mention it to the doctor.  Who knows.  Maybe it was a side affect or something.

Well, it turns out it is.  After I got home and did my own research, I discovered all three of the medications I’m on cause muscle pain, one or two cause the muscle cramps and get this!  One takes potassium out of the blood!  Can anyone say, OUCH!

I told my doctor, I can’t take this medication.  I have Fibromyalgia.  That will put me in a serous flare-up.  His response was that I had to choose between muscles or lungs.

I have worked my behind off for the last 20 years trying to find a way, a method that worked for me to handle my FMS symptoms.  I finally have and now I have to take medication that will undo everything I have achieved.  I don’t think so.

As I have repeatedly said on my blog, ultimately my health is in my hands.  The doctors do their best to give me options, but sometimes I have to determine whether or not that is the way I want to go, or even if that is the right/best way for me.

In addition, one of the inhalers I have been on can actually be fatal if not taken properly.  The new medication the doctor wants to replace two of my inhalers with actually has a history of doing just that!  Deaths were reported during the trials/study.  After the medication came on the market, CBS did a show because people were dying on it.  You might remember the show.  It was on Advair.

So now I have this quandary.  Do I take this drug with these horrible side affects knowing how susceptible I am to medication – and have already proven with the first treatment – or not.

That begs the next question.  If the answer is no, then where do I go from here?

If the answer is yes, how do I deal with all the repercussions and possible emergencies that might arise from the drug as a disabled woman who is living alone?

After I did research, I discovered that my muscles cramps and pain weren’t the only side affects I have been having from the meds.  Here is the long list of side affects that go with this medication.  The ones with * by them are sypmptoms I have been having and unable to explain lately!  Now I know … head shake.

Common side effects of Advair Diskus Inhl:

*Throat Irritation Less Severe
Acute Infection of the Nose, Throat or Sinus Less Severe
*Sinus Irritation and Congestion Less Severe
*Stuffy Nose Less Severe
The Flu Less Severe
*Muscle Pain Less Severe
Chronic Trouble Sleeping Less Severe
*Low Energy Less Severe
*Head Pain Less Severe
*Voice Disorder Less Severe
Thrush Less Severe
Feel Like Throwing Up Less Severe
Fungal Yeast Infection of the Throat Less Severe

Infrequent side effects of Advair Diskus Inhl:

Throat Pain Less Severe
*Cramps Less Severe
Involuntary Quivering Less Severe
Fast Heartbeat Less Severe
Heart Throbbing or Pounding Less Severe
Diarrhea Less Severe
Nervous Less Severe

Rare side effects of Advair Diskus Inhl:

Aggressive Behavior Severe
Increased Pressure in Eyes Severe
Cataracts Severe
Inflammation of the Cornea of the Eye Severe
Pink Eye Severe
Paradoxical Bronchospasm Severe
High Blood Pressure Severe
Abnormal Heart Rhythm Severe
A Spasm of the Larynx Severe
Bronchitis Severe
Worsening of Asthma Severe
Bronchospasm Severe
Lower Respiratory Tract Infection Severe
Urinary Tract Infection Severe
Skin Infection Severe
Hives Severe
Osteoporosis Severe
Decreased Calcification or Density of Bone Severe
Rash Severe
Visible Water Retention Severe
Abnormally High-Pitched Breathing Sound Severe
*Chest Pain Severe
High Blood Sugar Severe
Life Threatening Allergic Reaction Severe
Giant Hives Severe
Allergic Reaction caused by a Drug Severe
Reaction due to an Allergy Severe
Cushing’s Syndrome Severe
Feeling Restless Less Severe
Hyperactive Behavior Less Severe
*Earache Less Severe
Hemorrhage of Blood Under the Skin Less Severe
Inflammation of the Voice Box Less Severe
Inflammation of the Nose Less Severe
Toothache Less Severe
*Dry Mouth Less Severe
Indigestion Less Severe
Contact Dermatitis Less Severe
Eczema Less Severe
Itching Less Severe
*Joint Pain Less Severe
*Dizzy Less Severe
*Fever Less Severe
*Weight Gain Less Severe
*Trouble Breathing Less Severe
*Cough Less Severe
Throwing Up Less Severe
*Numbness and Tingling Less Severe
Easily Angered or Annoyed Less Severe
Anxious Less Severe

The list by itself is enough to send me into a tizzy.  Why in the world would you give this drug to someone with RADS – or serious breathing/lung problems.  Some of the side affects are trouble breathing, cough, worsening of asthma, bronchitis, ect!

Hello! I’m trying to get rid of my cough, breathing asthma-like problems!  I’m not trying to make them worse!

In addition, I have also been having this odd side-affect on this medication since I started it and until yesterday had no idea the two were related.  My voice changes and gets really raspy. And my tonsils are swollen and painful as are my lymph nodes.

Do I really want to go this route and make things physically worse?  Plus, there is no guarantee this will work.

If it doesn’t work, I’m looking at having to take injections twice a week – possibly – forever.  And get this.  Again, I can’t give them to myself because I have to be watched when I take them to make sure I don’t have an adverse reaction! Geesh!

I’m sorry but something is wrong with the way medication is being made today.  We take medication to treat the illnesses/symptoms we have.  We don’t take it to create the very symptoms we are trying to get rid off, or to add even more symptoms to our repertoire!  God help us!

And this is where my problem with doctors stem.  Especially since I have to use the VA and they are not CFIDS/ME and FMS specialists, i.e. qualified.  Actually, many doctors at the VA tend to be dismissive of both of these illness.  FMS less so, but still.

I now have a life threatening illness that I need their (doctors) help.  But…the VA doesn’t treat the whole picture, they treat specific things.

So in my case, the lung doctor deals with the lungs, no-one at this point is dealing with the left-over neurological problems I am still having and no-one is dealing with how to do this without making the CIFDS/ME and FMS worse.  In addition, no-one is monitoring how increasing my medication levels is affecting me neurologically either.

For example, since the toxic exposure, I have noticed if I do two treatments on my nebi, I shake uncontrollably from head to toe as I did on the day of the poisoning as the result of the poisoning and remaining neurological damage.

In addition, if I do three (sometimes that is necessary) I have the same gait problems I had the day of the poisoning.  Both situations eventually go away but the fact that there is a point where too much medication causes all the symptoms of the original poisoning to return is alarming.

Of course, the doctors don’t know because I haven’t been asked or in an appointment where I can discuss it.  Yet.

This reaction to increased medication indicates to me that chemicals that should be helping me can have the opposite affect if I take too much of them.

Unfortunately, the way the VA is structured, I would never see someone who can handle all of this together.  Thus, I am left trying to figure out how to move forward without taking 10 steps backwards or worse.

Be that as it may, however, I have no intention of returning to the days of writhing FMS pain.  Nor will I take medication, or do anything else for that matter, that reduces my quality of life.  It may not be what is normal to other people, but it is my normal and I worked really hard to get here.

Again, as I said earlier, I refuse to go backwards in this fight.  Thus, my next step is to figure out how to turn this all around and take my life and health back.  After that, I think I need to revisit the idea of the lawsuit.  I may have been too hasty in dismissing it.

Determined to continue forward,

"Author's Signature"

Common side effects of Advair Diskus Inhl:

Throat Irritation Less Severe
Acute Infection of the Nose, Throat or Sinus Less Severe
Sinus Irritation and Congestion Less Severe
Stuffy Nose Less Severe
The Flu Less Severe
Muscle Pain Less Severe
Chronic Trouble Sleeping Less Severe
Low Energy Less Severe
Head Pain Less Severe
Voice Disorder Less Severe
Thrush Less Severe
Feel Like Throwing Up Less Severe
Fungal Yeast Infection of the Throat Less Severe

Infrequent side effects of Advair Diskus Inhl:

Throat Pain Less Severe
Cramps Less Severe
Involuntary Quivering Less Severe
Fast Heartbeat Less Severe
Heart Throbbing or Pounding Less Severe
Diarrhea Less Severe
Nervous Less Severe

Rare side effects of Advair Diskus Inhl:

Aggressive Behavior Severe
Increased Pressure in Eyes Severe
Cataracts Severe
Inflammation of the Cornea of the Eye Severe
Pink Eye Severe
Paradoxical Bronchospasm Severe
High Blood Pressure Severe
Abnormal Heart Rhythm Severe
A Spasm of the Larynx Severe
Bronchitis Severe
Worsening of Asthma Severe
Bronchospasm Severe
Lower Respiratory Tract Infection Severe
Urinary Tract Infection Severe
Skin Infection Severe
Hives Severe
Osteoporosis Severe
Decreased Calcification or Density of Bone Severe
Rash Severe
Visible Water Retention Severe
Abnormally High-Pitched Breathing Sound Severe
Chest Pain Severe
High Blood Sugar Severe
Life Threatening Allergic Reaction Severe
Giant Hives Severe
Allergic Reaction caused by a Drug Severe
Reaction due to an Allergy Severe
Cushing’s Syndrome Severe
Feeling Restless Less Severe
Hyperactive Behavior Less Severe
Earache Less Severe
Hemorrhage of Blood Under the Skin Less Severe
Inflammation of the Voice Box Less Severe
Inflammation of the Nose Less Severe
Toothache Less Severe
Dry Mouth Less Severe
Indigestion Less Severe
Contact Dermatitis Less Severe
Eczema Less Severe
Itching Less Severe
Joint Pain Less Severe
Dizzy Less Severe
Fever Less Severe
Weight Gain Less Severe
Trouble Breathing Less Severe
Cough Less Severe
Throwing Up Less Severe
Numbness and Tingling Less Severe
Easily Angered or Annoyed Less Severe
Anxious Less Severe
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