Monday, January 31, 2011

The Psychology of It All

It has been just over 6 months ago that I was floxed for a second time.  I now realize that my previous symptoms were from my "mild" reaction in May of 2009.  So in reality, I have  been dealing with this now for one and a half years. After my second reaction, I remember reading the posts on all the Fluoroquinolone information pages, praying that I would have a quick recovery, that I would not have a story like all of the others.  That unfortunately did not happen, but at least I have “met” a lot of strong and courageous people who are fighting this same battle daily.
 
The psychological impact of Fluoroquinolone Toxicity, or any medical condition for that matter, is just as important as the physical aspects.  This is a difficult topic to share, but yet I feel it is very necessary.  It seems it is easier for us to share our physical ailments.  Sometimes it can be very daunting to think this could affect the rest of my life, and the fact that the damage still may not be completed can be overwhelming.  It is hard not to replay that day in my mind when Levaquin was inserted into my IV, and to think about the trauma it is doing to my body.  I get anxious when I have to drive by the facility where this happened to me.  To make matters worse, it is by Target.  Why oh why, does it have to be by TARGET!!  The constant doctor’s appointments, wars with insurance, people who don’t believe, add to this.   I now find myself scared of medicine---traditional medicine, alternative medicine, integrative medicine, you name it, and I have a fear of it.  Fortunately, my neurologist understands this and does not pressure different treatments on me.  In fact, he too is worried how my body will not respond to things now.

Some days I feel as if I am in a time warp. I feel very disconnected from myself and everyone around me, as if I am watching, but not really participating.  I am sure anyone who has gone through an illness, death in the family or any traumatic event can relate.  Usually that feeling goes away in a short while, and you eventually return to your normal way of life.  However, what if you are being reminded daily of this event, by the physical ramifications or even from the grief?  I feel like such a hypochondriac at times.  I see other people  post symptoms that they are having, and I think, “I have that!” and the thing is, I really do have that!  I feel at times I am walking around with Eeyore’s big black cloud hanging over my head.  How do you make the event that is so “large” in your mind, diminish so you can move on with your life?

I have a difficult time in doing anything by myself, some for physical reasons, and others because of the fear of what might happen. The fear of pain, in itself can be discouraging.  If I do too much, then I am left to suffer with the consequences.  I have this anxiousness, which was there before, but now it has magnified.   It is exaggerated by not knowing how to plan for tomorrow, next week, or next month because I don’t know what I will be physically capable of that day.   I get discouraged, and start to doubt my body’s ability to heal.   However, I am trying hard to push myself to get out more, to mingle and interact with others.  I find this can help take my mind off of the pain, even if it is for a short while.

My body and its capabilities are now different, so I too have to change my future plans.  However, it does not mean I have to give up. I have to learn to move on with this new life I have been given.   I am not trying to make it seem simple.  It is not, by any means.  It is a daily struggle.  Some days that struggle is more difficult than others.  On those very frequent days, I think I sound like the Queen of Hearts being demanding and barking orders to my family.  “Off with their heads!”   I have to learn that patience is my friend, for I truly think the only healing cure for any of this is time.  It is o.k. to have these feelings; it is our normal human response to any tragic event.  Nevertheless, I have decided I have to step away from the grief, not be consumed, and have a new vision, new priorities.  I have two choices with this war within myself, continue the fight or surrender.  I have decided I like the first option best. But, winning the war requires embracing the enemy and facing the psychology of it all.

9 comments:

Michele said...

Very well said. I often find myself just plain weary of the whole ordeal!

Mimi said...

Excellent article!! A topic which should be discussed and is often swept under the rug. It is hard to admit to ourselves,much less discuss with others, that life has changed,life is not the same.

Sallie Belle said...

I agree with you! I have felt that feeling of watching it all happen to me. It is weird. I do not think my mind has caught up with my body...like sometimes (without brain fog) my mind still thinks I can do it all. I also know the feeling of grief. I think it is natural to grieve our old self. I am grateful that you have taken your experiences and shared symptoms and real feelings. It helps so many who can't express for themselves. You are not alone, my friend. I am praying for you daily! Love ya!

Anonymous said...

I'm so sorry that you are going thru this. I was floxed by Avelox over 3 years ago and ended up with a list of symptoms similar to yours. I had Peripheral neuropathy, and a lot of other ADR side effects.

All I have left now is some eye floaters, all my other physical issues are gone. I attribute it to time, and my wonderful alternative doctor (TCM and bio nutritionist/ acupuncturist) who understood drug reactions and knew how to treat them with custom diet, supplements/herbs vitamins, and acupuncture treatments all at once and custom according to my blood work and other tests that were taken on me every 3 months. Testing was often so he could monitor my improvement and as my body changed, my treatments could change so my body constantly got what it needed to help it heal. I started out seeing him 3 times a week for acupuncture treatments and so he could watch my symptoms carefully as they changed and I cycled etc.

I highly recommend acupuncture by a professional who knows what they are doing for the CNS issues, it really made a difference with my nerve issues. Within 4-5 months of treatments all the burning, stinging, twitching, etc. was gone.

As your post suggests, the mental/ emotional part of the reaction is really hard to deal with, sometimes worse than the physical symptoms, it's basically a form of PTSD. My doctor suggested EFT to help with the emotional and physical at home when I needed it, it really made a difference in my recovery.

Learning and doing EFT (Emotional Freedom Technique) often can really help you with both the emotional and physical issues. It's a needless form of acupuncture that you can learn to do on yourself to help you heal from emotional or physical trauma.

Some info on it and success stories using it.

http://tappingqanda.com/learntapping/

http://www.eftuniverse.com/

Wishing you all the best with your healing.

Frogigit said...

Where do I begin??? Mine has been ongoing longer than I care to think! It's been so long and taken me to just last week to finding out what has changed my life so drastically! I have been fighting this battle I believe since 1987! And just found out that everything I have been experiencing has been from repeated dosages of Cipro and Levaquin! I had a reaction to Cipro and put it on my do not take list (allergies). But, then was given Levaquin and never told about side effects! I remember well the first reactions to the Drug and now I am experiencing them again due to my Dr. reintroducing me to Levequin! I saw her repeatedly with symptoms from the drugs and she continued to prescribe me drugs not knowing the Levaquin was killing me! Now in at the point where the side affects have completely taken over my Body! The worse being my heart feeling like it's dying! But I've had all the test done (Stress, echo, Doplar) so many I can't remember all! My heart feels like sometimes it's gonna jump out of my chest and others skipping beats, making me feel really tired! I just realized that my Achilles tendon has been damaged after several months thinking it was a bone spur! I am now on bed rest trying to heal! It's scary! The last thing I was told by my Dr., just after she threw her hands up in the air was! I don't know what's wrong with you! Maybe she didn't but now we do and I need to get the courage to let her know! As to help others be informed about these horrible drugs! My story is so detailed I don't even know where to begin! But, first I would say don't take Levaquin or Cipro! It's not worth the risk! And believe me they are greater than is being disclosed on the Black box Label!!

lmccand said...

Thanks for sharing your story. It is amazing to me that doctors themselves don't realize that Cipro and Levaquin are the same drug, just made by different manufacturers. I have told my daughter's doctor that she can not take fluoroquinolones due to her epilepsy, and I just got a blank stare in return. "A what?" was the response. After I listed cipro, levaquin, avelox, she finally new what I was talking about....scary.

Anonymous said...

Thanks for creating this site and sharing your stories, Lori. I can relate to much of the psychological stuff. Time will heal, and we will gain recognition someday. :)
-Troy C

Kristin said...

I feel so fortunate to have found this blog and specifically this post. I am roughly 9 years into the whole floxy journey (Originally floxed by Levaquin in 2002 and refloxed by Cipro in May 2011) and like so many others, only recently connected the dots and figured out where my "mystery illnesses" stem from. Now that I know, processing everything and dealing with the emotional aftermath all while being refloxed has overwhelmed me emotionally, spiritually...everything. I'm struggling. Your post captures and validates so much of what I feel...it's very existence makes me feel better! THANK YOU.

lmccand said...

Kristin, thanks for your kind words. I am terribly sorry that this happened to you again. I think the psychological aspect of this can be just as bad, if not worse, than the physical in some cases. When I had to take antibiotics for my recent diverticulitis, I was a complete basket case. I shed tears like you would not believe at the thought of having to put antibiotics in my body. The anxiety was overwhelming. I know your recent exposure was in May, but it will get better. These feelings do also lessen, even though they still occasionally rear their ugly head. Take care, and please keep me posted on how you are feeling.
Lori