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Yesterday, Today, and Tomorrow

January 30, 2011

Yesterday

Well, I promised an update on Joe’s birthday and suffice to say, it was wonderful and he had a good day.  He was able to cook dinner and celebrate his day with family and friends.  This, as you may well understand, was an unexpected treasure.

The following days, however, brought more pains and ever increasing and even new side effects.

Curling Toes:

Joe has noticed that his toes are curling more now than ever before. No one will acknowledge that the curling toes have anything to do with tendon damage, but my question is: “How could it not?”  Tendons connect the toes to the feet and his toes NEVER curled before.  But over the past year his toes have become more and more bent to the point that they rub inside his shoes.  He always had very narrow feet for such a tall (6’3″) man wearing narrow width New Balance shoes for work and play.  Then he had to start wearing the average width and now, the last pair of shoes he bought in December, wide width — just to feel comfortable in his shoes.

Memory issues

We were married a seven years ago in a civil service, but had never had our marriage blessed by the church.  Joe’s mom really wanted that to happen and last December, I was able to clear some obstacles and we were able to have our marriage blessed in a nice little ceremony with some of Joe’s family present.  A couple of weeks ago, we were at church and the priest was talking about the sacrament of marriage.  Joe looked at me and said “We really need to schedule the marriage blessing with him.”  Frankly this little “memory blip” terrified me.

Joe has had memory blips before — sometimes he forgets where he put the keys or his cell phone or wallet – or he forgets that he has already been to the grocery store – these aren’t so frightening – but a big event – we had a ceremony, dinner and the event lasted pretty much all afternoon – just seemed like WTF?

I reminded him of the day and then he remembered – the event safely stored in his cells, but the fact that for probably two – three minutes, he didn’t remember having done something that had been such a big issue was frightening.

The Latest:  Nosebleed

Last night, quite suddenly, Joe developed a nosebleed.  I am particularly affected by nosebleeds because my Mom used to get them due to her chronic suffering from Hepatitis C.  As her liver degenerated due to the disease, she began to develop more and more nosebleeds.  I have, for some time now, been concerned over the amount of acetaminophen that Joe is prescribed in conjunction with his Lortabs… the doctor has refused to take him off the combined hydrocodone/acetaminophen drug and just give him the hydrocodone for pain relief, saying that the acetaminophen “controls” the amount of hydrocodone Joe takes. For what it is worth, that is true, because Joe doesn’t want any further damage to his already-ravaged body so he watches closely to make sure he doesn’t overdose on acetaminophen. I belive that it is just laziness on the part of the physician that he “controls” the hydro by running the risk of liver damage.  This new development makes me all the more concerned that liver damage is in our future.

Emotional Stress

Over the past month, Joe has lost several people who were close to him… first, my uncle Herb passed away at the end of December at the age of 93 of complications from prostate cancer. We had not been able to travel to see him for several years and this first death hit Joe pretty hard.  It made him start thinking about his own mortality and the quality of his life between now and the end of life.  This set the stage for his 56th birthday on January 16.  He, like so many people do when they pass the mid-point of the fifties “did the math” and realized that he had far fewer days in front of him than he had behind.  This sent him into an emotional tailspin that lasted until the second death in our family… Joe’s uncle Ron.  Uncle Ron died last week (at 83) after having shoveled his snow-covered drive and sidewalks and suffering a heart attack.  Although Joe had talked to his uncle many times, we hadn’t seen him in several years, despite the fact that he only lives 40 or so miles away. The second tailspin began – the primary reason, over the past couple of years, we haven’t seen either of these now-passed uncles was because we really couldn’t because of Joe’s health issues.

Within a day of Uncle Ron’s passing, another extended family member – a brother-in-law of one of Joe’s brothers – died of ALS – he was 63.  This only continues the tailspin – someone so close in age passing away of such a terrible disease.  Today is Don’s wake and Joe doesn’t feel he can attend because he is in such pain.

This is the kind of thing that has been happening for the past two years – some family event – good or bad – wedding or funeral – picnic or wake – happens and Joe is having a bad day and can’t attend, despite all his good intentions and desires.  This not only add stress to his life, but it tears away slowly but surely at the quality of his life.

Tomorrow

We have a number of things planned over the next few months.  We want to make a trip to see my aunt and my brother, a dear friend has a milestone birthday in June, we want to visit our daughter, we want to go to the family reunions planned for the summer… The saddest part is that we aren’t even sure if we can go to the funeral tomorrow.  Not only will it depend on Joe’s overall condition, but it will depend on weather conditions as well – we’re slated for another snow/ice storm to come in tonight.

The only real relief we have is of our own making – hope. Hope that it will be a good day tomorrow and not a bad one.

All Our Tomorrows

The terrible truth of these horrible drugs – ciprofloxacin and levofloxacin and all the other “floxins” – is that they affect the quality of one’s life.  A drug that is supposed to “cure” you of an infection isn’t supposed to take your living life away from you. I understand that many drugs have side effects that are unpredictable. I have read the flames coming from people who are too cowardly to put their names on their flames.  These flamers would have you believe that if we don’t want to be “cured” we can just not take the medicine and “just die”.  They would blame the victim as so many other victims of other crimes have been blamed.  The thing is, my husband didn’t have a choice. No one, not the doctors, the nurses, the hospital pharmacist, or the retail pharmacist warned him about the possible side effects.  The first time he received these drugs was in the hospital thus there was no package insert to read and contemplate and agree or object to… just a bag of poison appearing on the IV rack. No one listened when he told them he hurt. And no one listens even today as he tries to get his doctors to understand that he was not an unhealthy, pain riddled, toe curled man when this started in spite of his diabetes! They all want to make this about the diabetes ONLY.

Well… I believe it is about the diabetes.  It is about how fluoroquinolones react with the underlying health conditions of a patient.  It is about how Big Pharma didn’t do their homework to understand how this class of drugs could damage an individual with the underlying health condition of diabetes.

Please understand that I am not saying that these drugs will only damage people with underlying health conditions – I am not! These drugs are dangerous and should only be used as the last line of defense against an infection.  Too many have been harmed by just a pill or two to deny that they are harmless.  Too many more have been harmed by the direct infusion of these poisons into their blood stream.  (I have only recently discovered another person’s blog about this type of damage.)

Please if you are reading this or anyone else’s blog, if you or someone you know has been poisoned by this drug, do something! Start your own blog.  Join the Facebook pages.  Most importantly, post your experience with Med-Watch. (see links below) We must raise the consciousness of the public about this horrible toxin that is being handed out like mints in our doctor’s offices and pharmacies.  We must raise the consciousness of the public that you can be given this drug without your knowledge of its side effects.  You may, like so many of us, feel like we are waving our lanterns in the darkest night – but someone else will see it – and then someone else – and then someone else…

© 2011

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    Today is Joe’s Birthday

    January 16, 2011

    Well, Happy Birthday Joe.  Today he awoke with pain only on his left side — go figure.  But he’s awake and moving around so this is good.  The sad thing is that in just under two years he’s gone from a robust and active 54 year old man to the 56 year old pain filled man I’ve introduced to you on these pages.  I’ll post more about the birthday later, but for now, I’ve gotta go — We have a birthday party to attend!

    © 2011

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    Good days and bad days…

    January 14, 2011

    So many of our friends and relatives call and ask “How’s Joe?” And the answer is always “Well, he has good days and bad days.  Today is a …”

    Well, today is a good day.  He is actually feeling pretty good today and that always makes me feel better.  Hah!  Today is actually a “bad” day for me since I feel like a cold is about to catch up to me.  Must eat more grapefruit.

    The past several days have been the same pattern for Joe – good day/bad day.  A lot has to do with the weather – we live in the Midwest and currently have about 8 inches of snow on the ground and have just today crept up to 32 degrees F.  There’s nothing like a below-0 temperature outside to make your everything hurt.

    So I asked him today what he’d done differently that made him have more energy and less pain.  Aside from just consciously keeping himself calm – by that I mean cut the stress at the start and not let the stressful reaction take hold – he has been “working” his meds.

    Joe is on 20 mg Oxycontin (twice daily as needed), 10/500 Hydrocodone (up to 2, 4 times daily as needed), and 1200 mg Gabapentin daily (400 mg 3 times daily).  These are the drugs that are most effective for his pain.  Lately he has been spacing them out over the morning: Oxy early – around 6:00 a.m., then the Gabapentin along with his other drugs around 8:00 or 9:00 a.m., and then an hour or so later a Hydro if he needs it.  This has been working quite well.  Previously he was just not really paying attention to what was working when.  We knew they all made a difference – he simply cannot go without any of them.  What is interesting though, is that the Gabapentin is probably as critical to his pain control as the Oxy.  He found this out the hard way recently because he ran out and since they aren’t “known” as pain killers, he figured he could wait a day or so to get them – well the day ran into four days and finally when he got back on the Gabapentin, he realized how much help the drug really was.

    Good to know that there are good drugs — ya know.

    He is monitoring this all much more closely but he may well have found the right mix.  This is not to say that he no longer has pain – he does – what it does mean is that he can control it and not be loopy because of the amount of hydrocodone in his system.  Yay.  Maybe the days of his sitting here and snoozing for 4-6 hours are past.

    © 2011

     

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    Why Does it Hurt So Much Update

    January 5, 2011

    Just a quick post today and then I promise I will get back to more regular posts here…

    In a comment on my Alone and Yet Not, post, Lori (her blog is Down the Rabbit Hole … and in to chronic illness) reminded me of the name I was looking for in my Why Does it Hurt So Much post.  Bob Grozier (there’s lots of Google stuff on Bob – here’s a brief intro to him on John Fratti’s site Death By Levaquin.)  She also gave me the link to the video I was talking about.  A word of warning:  It is very difficult to watch this video — Bob is in so much pain it is painful just to see it.  Lori said in her comment that she’d been in that much pain and I am here to tell you I have seen my husband in that much pain as well – he is just much more — stoic — about it, no screaming but tears — it really doesn’t matter though because, when someone you love is in this much pain it just hurts you as well.  FYI you may want to turn your speakers down a bit — Bob screams in pain a lot.

    © 2011

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  • Levaquin & Cipro – a blog
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  • Levaquin Blog
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  • Death by Levaquin
  • Alone and Yet, Not

    December 14, 2010

    As I sit here, thinking up today’s blog entry, reading news articles, thinking about the state of the world in general, my husband, Joe, sleeps rather soundly in his chair next to me.

    It is 3:00 in the afternoon on a Tuesday.

    As I started to think about what to write for today, I came up with the idea of being alone.  Because, I am … alone … mentally anyway.  He is asleep, so are our dogs.  And I am here, standing watch, if you will.

    Why is he asleep? If I am “alone” or “lonely” why don’t I wake him up.  I do – occasionally.  He has to wake up and take medicine.  I have to change the dressing on his leg from his knee surgery.  I have to add ice to the Polar Care device that is wrapped around his knee – so there are times he’s awake.  Some days, he’s awake all day.  But on days like today, when he sleeps so soundly, I just let him do it.

    See, when he’s asleep, he isn’t hurting.

    It is as simple as that.

    And as complex.

    The sad complexity is that sleeping means you aren’t living your life in real time.  You aren’t experiencing a higher quality of life that we all wish we could have back from these dreadful drugs that we willingly took so that we could be “better”.

    Joe is not “better” and the thing that makes me so very angry is that the Cipro and Levaquin were not the drugs that made him “well” – those drugs were the older, conventional antibiotics that cured his cellulitis.  NOT these terrible, life-altering, drops of poison that took away his living life.

    I know many floxed persons have insomnia – so I guess we should be grateful that Joe doesn’t.  But, sleeping too much is just as awful as sleeping too little.  Both take away your living life.

    Both make you just a little less alive.

    Yesterday was an alive day for Joe.  He cooked dinner for his parents. He hobbled around their kitchen and made his Mom’s favorite goulash.  He was in pain yesterday.  Lots of pain, the shooting neuropathic pain, the hot irons pain and “real” pain from recovering from his knee surgery.  But he still did something that he loved to do – cooking.

    Today he is paying for it by sleeping all day.

    And today, I pay for it by my heart breaking just a tiny bit more.

    © 2010

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  • Why does it hurt so much?

    December 6, 2010

    Well, today is one and one half years since my husband’s floxing began and I have to tell you it has been hell.

    I don’t know how he stands it because when I see him in pain, I don’t know how I stand it.  The last couple of days, what with the real onset of the cold weather here in Kansas, his pain has been significantly worse.  Some of you may have seen the video of one of the fathers of this cause — sorry — I’ll remember his name and include a link later — in this video, he and his mother are in the same room and he is absolutely beside himself in pain.  You can see that his mother is beside herself too, but trying valiantly to hold it together while her beloved son loses it.  The video is long and quite painful to watch.  I have watched it once — way back in August or September of last year and thought at the time, “Please don’t let it get that bad.”

    From time to time I think for Joe it gets almost that bad.  He stoically holds on, but sometimes he does indeed cry.  I am not as good at holding on to my emotions when he loses it and I have, unfortunately, at times lost it right along with him.  Of course this doesn’t help.

    Years ago, when I was still trying to nail down a subject for my dissertation, having just directed a production of Joined at the Head, a play about a woman dying of cancer, I considered a topic studying plays that address disease, both the chronic type and the terminal type.  What I was interested in — having only then recently gone through my mother’s death from a chronic and terminal disease, Hepatitis C, which she had contracted from a blood transfusion in the mid 1960s — was how the ill person changes the space around them and the ways that all their family, friends and even strangers have to change their lives to accommodate the unwell person. Ultimately, I was talked out of writing that dissertation by my advisors — too depressing — not interesting — not life affirming — basically they didn’t want to read it.

    Today, I am still interested in this subject — I have lived through those changes so many times – with my father, my mother, a grandparent and an aunt who lived with us for a time, and now my beloved.

    This thing – this floxing – this torture – foisted upon us causes us to change our world – rearrange our world – not just the furniture so it is easier to walk through a room or the bedside table, now covered in medications to treat the symptoms and the pain – but everything about who we are, what we do, how we think, even where we live (we’ve even considered moving out of the cross roads of every front that moves through the USofA – but not for Joe’s family – well, who knows).

    And all because – as my dear spouse pointed out in abject frustration – because someone paid too much attention to the pharmaceutical rep and not enough attention to him.

    We did what we were supposed to do.  We told the doctors, nurses, pharmacy techs, phlebotomists, everyone we came in contact with at the hospital, doctor’s office and the pharmacies “something is wrong” – and no one – no one paid attention.

    I wish I could end this post on an up beat – but today – I’m having a hell of a time just staying level – up is a long way from here.

    © 2010

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  • A long rollercoaster ride in August!

    September 2, 2010

    Greetings folks! It has been a little while since I posted. Sorry for the delay but we’ve had quite the August here in Ciproland. Joe has been investigating his newest symptoms — the blood in the urine — over the last few weeks.  We went to a recommended urologist who felt that there was a need to do a cystoscopy.  That was accomplished on — believe it or not — August 13 — Friday, August 13.  Now I am not one of those triskaidekaphobes nor is Joe.  We scheduled it for that day because we wanted info asap and this was asap.  All went well until they tried to wake Joe up from his anesthesia. He quit breathing.  They intubated him and he suddenly woke up freaked over the breathing tube and then went back to sleep — able to breathe on his own.  They kept him overnight in the hospital for observation — and all ended well — with a few med changes on his heart med-side.  There was nothing unusual about his urinary tract or bladder.  Last week Joe had a prostate biopsy and happily, he is clear and free of cancer.  Still no answers as to why there was blood in the urine, but at least there is no serious visible damage to his body parts.

    As far as his other symptoms — neuropathies, shoulder pain, lack of flexibility, overall general body pain, malaise, brain fog and on and on… still there … no one wants to acknowledge that it was even remotely possible that the ciprofloaxin or levofloaxin had anything to do with the problems, but we know differently don’t we?

    Here’s hoping that September is less physiologically — um — interesting — yeah that’s the word I was looking for.