Two Year Floxiversary: Lessons Learned

`You're thinking about something, my dear, and that makes you forget to talk. I can't tell you just now what the moral of that is, but I shall remember it in a bit.'

"'Perhaps it hasn't one,' Alice ventured to remark. "'Tut, tut, child!' said the Duchess. 'Everything's got a moral, if only you can find it.'"
- Lewis Carroll, Alice in Wonderland, Ch. 9

Today, it has been two years since receiving that ill-fated dose of Levaquin.  I haven’t posted in a while; I have been trying to use this time to reflect on how my life has changed, and to find my new role in life.  At times, I feel so consumed by it all, I wish I could run away and just hide.  While other times, I feel I have embraced what has happened.  I have dealt with chronic illness for six years now, first with my daughter's epilepsy, and now my Quinolone Toxicity and peripheral neuropathy.  Having been a healthcare provider as an Occupational Therapist, I have insight from all three perspectives; as a caregiver at work, a caregiver in the home, and now as the care receiver.   I will say the latter, has taught me the most.  The following are valuable lessons I have learned dealing with chronic illnesses from all three points of views, especially the past 2 years.  While a few of these will be familiar from previous blog posts, others are new.   I don’t necessarily always remember these lessons, and I probably need to review them myself at times.  This list is a stream of consciousness.  I thought it would be short, but it kept growing.  I would love to hear from you.  What lessons have you learned?

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Make doctor appointments on Mondays or early in the week.  On Fridays everyone in the office is ready for the weekend, including the doctor.  He may not be as focused on you, but more focused on his weekend getaway.

Make appointments first thing in the morning or first appointment after lunch, this will reduce your wait time.

Bring something to read, in case you could not get the first appointment.

Ask your doctor how he is doing.   He probably doesn’t get asked this much.  He spends all day listening to other people constant complaints, and probably very few have asked him about his day.

Fire your doctor if he is not working with you, you feel he does not fully listen, or you don’t trust his decisions.

Always make a list of questions you have for your doctor.  In such a short amount of time spent with him you will more than likely forget something.

Educate yourself about your diagnosis.  Knowledge is power and you can have a much more meaningful conversation with your doctor if you know all of the medical terms, treatment options and available testing.  Read books, research online, talk to others with the same diagnosis.

Take notes or have someone go with you to take notes.

Keep track of all medical information.  Get copies of medical records from all of your doctors.

Have doctors share information.  Make sure all tests are forwarded to all your doctors with a summary note.  This will help stop duplicate testing.  

Start a "Care Book" (See page)

BE YOUR OWN MEDICAL ADVOCATE!

Be prepared to fight insurance.   Insurance will always say no the first 2-3 times, but be persistent.  They are hoping you will give up, that is what they are counting on.  I found a well worded letter can still do the trick.

Research what medication you are being prescribed!  Ask the nurse what they are injecting into your IV before they do it. 

Medication can help with pain, and don’t be afraid to use them.  But proceed with caution!

Know you are not alone; 1 in2 people have a chronic illness.  Find support groups even if they are online.   People you meet online can sometimes be your best support. 

Remember most of the people you meet in online groups, are the ones that have not yet gotten better.  Those that have improved usually are no longer actively posting. 

Share your story, so others can learn from you.  Through sharing, you may receive advice, a doctor suggestion, or an idea you have never thought of before, that may make a difference in your health.

The Internet is not always right.

Educate your family and friends if they are willing to listen. 

Realize not everyone is going to “get it”.  Some will always think it is your fault; it is due to too much stress, lack of faith.  You have to learn to move on, and not get stressed that they don’t understand.  Find people that do understand.

It is NOT your fault that you are suffering from a chronic illness, or any illness for that matter.  We are human and are susceptible to all kinds of diseases, human error, or accidents.  Instead of asking why me, ask why not me?  We will all get something, at some point. 

No one experiences pain the same, and how it affects a person depends on their lifestyle and responsibilities.

 

It is o.k. to cry…you may even have a pool of tears.  Grieving for your former self is normal.

Watch for signs of depression.

Focus on what is “right” with you.

Write a journal.  Mine is online, but yours doesn’t have to be.  It is a good way to help with frustrations and anxiousness.

Be positive, surround yourself with positive people.  Avoid negativity.  That will not help you get better.

Ask for help.

Rely on your church, friends, and family for support.  They want to help.

It is hard to accept help!

In helping others, send cards, make a phone call, send an email, bring food in disposable containers, it is ok if you don’t know what to say.  Don’t be embarrassed that you have waited too late to call.  Any time is better than not at all.

Teach your kids all household chores; you never know when they will need to help because you are unable to do it.

Remember, your family is going though this as well.  It is not just you affected by the chronic illness.  Not all of them will react the same way.

If you are having a bad, crabby day….warn your family, and then go to your room!

Get a temporary handicapped hang tag, even if you never use it.    At least that option is there if the situation arises.

Use the handicapped space when you need it.

Don’t abuse your handicapped tag.  If there is a close space that is still reasonable for you, save the handicapped space for those who need it more.

Don’t be ashamed to use assistive devices.

Get outside of your comfort zone, test yourself, you may have gotten better and not know it. Take a trip!

Pace yourself, don’t overdo it.

Plan your day, allow extra time than normal incase fatigue hits.

It is o.k. to do nothing.  Take a nap.

Get help in the home, if your are able.

No pain, no gain no longer applies for exercise.  Slow and easy wins the race from now on.

Eat healthy.

Plan out your weekly meals:   Ask friends to prepare meals that can be stored in the freezer for future use.  If your husband travels, have him grill extra chicken before he leaves to be used later in the week.  If you are having a good day, make things to stock in your freezer for when you are not feeling well.  Use www.emeals.com for food planning, and your grocery list.

Chocolate cake is perfectly acceptable for your kids for breakfast.

Pets can be the best comfort.  They are good listeners and don’t give bad advice.

Beds can go unmade.

Read something NOT related to your illness.  Take a break from it.

Listen to uplifting music.

Crow a little.

Be grateful!

Sing!

Laugh!

Pray!

LIVE!!

 “One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.” - Ida Scott Taylor

Thanks for Reading!

Humpty Dumpty

One of the most beloved characters that Alice meets along her journey in Through the Looking Glass is Humpty Dumpty.  You know how it goes…..

“All the king’s horses and all the king’s men 

Couldn’t put Humpty together again.” 

I feel like Humpty at times.  It is taking a team of doctors, therapists, and gadgets to put me together again.   I feel I am almost there.  Not 100%, perhaps more like 60% to 70%*, with a few missing parts from my shell.   This is a long way from almost a year ago, when I felt I was in a thousand different pieces; Staring at them all, not having a clue where to begin to get my life back together.  

There have been some wonderful things to help me with this progression.  The first has been a good friend, one who calls and/or visits weekly.  You know who you are. :-)  Without this support, there have been some weeks I am not sure how I could have done it.   Just having someone to visit with, listen, help keep my mind off of the pain, helps immensely. 

The second, my podiatrist; who knew that an ointment could provide such relief to my burning feet.  I still have periods of pain, standing still is the absolute worst, but it has helped greatly with the nightly burning pain.  She has also prescribed Silver-thera Socks.  I often joke I need to attach my bionic legs every night.  They are the most attractive socks ever!  Not!  However, they send micro electrical currents to my legs while I am sleeping (impulses 20 min on, and 40 min off continuously).   They take the guess work out of where to attach the electrodes, as you would in a TENs unit.  These provide electrical stimulation at the cellular level to nerves, blood vessels, and tissue.  It is supposed to increase blood flow to promote healing and to prevent further atrophy.  It is a relatively new therapy, and my insurance did cover it.  It is not a quick fix, but is considered a long term treatment for neuropathy.  Most see improvements after three months of use.  At this point, I will try anything to save the muscles in my legs.  

The third is Aquatic Physical Therapy. This allows me to exercise without excessive stress to the joints, and work on balance exercises I could otherwise not do outside of the pool.  The last month, I feel the biggest progress has been made.  I have been going to the therapy pool for two months now, which has helped tremendously in my joint and muscle pain.  No, it is not gone, but I have gone from taking pain medications daily, to only once or twice a month.  My balance has increased, and I dare to venture out without the use of my cane for short trips.  I still need it if I am going to be out for long periods of time walking or standing, because of fatigue and the pain that usually accompanies it.  

I still have to pace myself, and try not to overdo it.  However, I have been known to push the boundaries too far, only to pay for it later.  I still need help with the heavy duties ~ cleaning house, cooking a meal, grocery shopping, gardening, but I am now able to take more responsibility in all of these areas.  I feel I am slowly getting my role back as CEO of our family corporation.  The pieces of this Humpty Dumpty are slowly coming back together again.

Thanks for reading!
* post note 6/17/11~This was originally posted as 80%.   My husband says I over shot my percentage of healing.  I guess it really is hard to measure.  Some days I do feel 80% when I compare to those first couple of months where I was essentially totally debilitated.  I most likely felt really good the day I wrote this post.  I think after being so low in my health, my idea of 100% has changed some.  It has given it an all new perspective.  However, when I look back at the things I used to do--paint my house by myself, exercise daily, was the "fix it" person, essentially was on "go" non-stop.  No, I can't do these things, and may not ever be at that level again.  When I compare myself to my "former" self, I would have to say it probably really is 60-70%, and on a really, really good day I feel like 80%.  I guess it is really hard to put a figure on it.  It is all so relative, compared to the pain I once was in.  Perhaps I should not have tried to qualify it.  Either way, I feel I have made significant progress....:D (if you read my pasts posts,  you know I can't do math anymore anyways LOL)

How Are You?

“How are you?”  Boy! That is a loaded question.  It is funny how I react differently now to the typical greetings that everyone uses.   I am even so programmed in giving the typical pat response “fine,” that I responded that way to my doctor during one of my previous appointments.    He hurried into the room where I had been waiting for him.  “Hi, how are you today?”   “Good,” I answered without skipping a beat.  He stopped and looked at me with the questionable look of doubt.  “Really, you are feeling good?”  Oops, I guess I better be a little more honest with my doctor.  “No, not really,” I chuckled, “I am just used to saying that.  I am actually in a lot of pain, and not doing well at all.”   That is more like it, not smart to answer your doctor like you do everyone else.

I have been having a hard time with this question.  It really is a loaded one.  I could say “fine” or “good”, but then everyone thinks that I must be completely healed.   I could go into how I am really feeling, but I don’t think they want to hear about all of my aches and pains that I am probably hiding behind my smile.   "Some days are better than others;" I have decided this should be my general response.  It lets them know that today I am doing well enough to be out and about, but I don’t necessarily feel that way every day.  Heck sometimes I don’t feel that way every hour. 

`Who are YOU?' said the Caterpillar.
This was not an encouraging opening for a conversation.  Alice replied, rather shyly, `I--I hardly know, sir, just at present-- at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'

“Well, you look good; you don’t look like you are sick.” I know everyone has good intentions when these common phrases are used.  I have used them too, hundreds of times.  It is odd how I read more into these good-natured remarks now.  They also lead to a cascade of different emotions.  Do they not believe me?  Do they think I am making up that I am in constant pain?  I have gotten better with these statements.    They used to really bother me when my body was first injured by Levaquin.  I have finally realized it is not the person sending these remarks that is causing these emotions.  It is me!  I am causing them.   I have this deep need to make sure everyone knows or understands what has happened to me, to feel believed.   I can’t let go of the doubt I feel others might have.  It is my control-freak inner self.

You know what?  Not everyone is going to understand or “get it”.  I have finally understood this revelation.  This eye-opener of what is causing these emotions has now allowed me to accept them for what they are.  They are well wishes sent by people who care.  They may not have the need to know every detail, but they are concerned enough to ask.  Now I realize it is nice to hear these compliments.  It is good to know I don’t look as bad as I feel.   So bring on your “How-are-you” and your “You-don’t-look-sick” remarks.  I now know how to accept them, and will proudly, and hope gracefully, embrace them.

The Cheshire Cat

“Well! I’ve often seen a cat without a grin,” thought Alice; “but a grin without a cat! It’s the most curious thing I ever saw in all my life!” (Lewis Carroll, “Alice’s Adventures in Wonderland”, 58)

This week I have joined 226 other bloggers on "Bloggers Unite"”, for Invisible Illness Awareness Week..  Nearly 1 in 2 people in the US have a chronic illness and about 96% of it is invisible.

Invisible Illness is a curious thing.  It is much like the Cheshire Cat in Alice in Wonderland.  Most of the time you see the grin, but not what is behind it. That smile can look absolutely perfect, yet it can hide a great deal of pain.  I can tell before I even get out of bed what my day is going to be like.  This morning, my right arm did not want to move.  Uh oh, it’s going to be one of those days.  I hobble to the bathroom, and then try to make it down the stairs without my 3 dogs knocking me down.  Where’s that cane?  Darn! I left it down stairs last night.  My right foot is the worst.  It screams with pain—mostly it feels like it is being burned by a blow torch, other times it feels like acid is burning me inside.  The weirdest feeling is sometimes it feels wet.  I have to look down to make sure I haven’t spilled anything on it.  It is very strange.   As Alice would say, it is “Curiouser and curiouser!”    The pain is a little more bearable during the day, but even so, it never leaves.  It is always there, just like the Cheshire Cat.  The nights are the worst.  The pain consumes my whole body.  I spend most of my time in the bath to help relieve the muscle pain, or in the bed.  I have to take pain meds most night.  Sometimes it works, and other times it just barely takes the edge off.  Last night was one of those sleepless nights.

However, I am just as guilty as anyone not believing or understanding the pain of others.    As a therapist, I knew my patients were in pain, and I could try to sympathize with them, but I know now I never really truly understood.  I wish I could go back in time and explain.  Even in my own family, my grandmother suffered from chronic pain.  Now my father does.  I have looked at people who park in handicapped parking, yet walk into the store.  I usually think to myself, “Why is he parking there?  He can walk fine.”  Now I realize maybe that person is in great pain, and will have difficulty even maneuvering the store.   My husband keeps encouraging me to get a temporary parking sticker.  I am putting it off, because I know I will get those looks now.  However one day, as I was trying to walk into a store, a group of senior citizens passed me crossing the parking lot, because my legs will no longer let me walk fast.  It completely wears me out to go into a super size store.  I now have an entirely different perspective of what these people in my life have gone through.  Unfortunately, I have joined their group.  Like Alice, I want to protest.  I did not sign up for this!

"But I don't want to go among mad people," Alice remarked.

"Oh you can't help that," said the Cat: "we're all mad here. I'm mad, you're mad."

"How do you know I'm mad?" said Alice.

"You must be," said the Cat, "or you wouldn't have come here."

So, like Alice I am here among the “mad” people or in my case the “chronic pain” people.  We often hide our pain behind our smiles.  It is a double edge sword.  We want validation of our pain, yet we want to hide it too. We may not look “sick”, because we aren’t.  It is a very strange concept to understand.  We still want to get dressed and look our best.  Invisible Illness does not discriminate.  It can affect any age, race or gender, or at any inopportune time.  Just because we may "look our best", it does not mean our illness is still not there, lurking, like the Cheshire Cat.